endometriosis... help!

starlight1 · 13-11-2013 9:29pm

lynp27 wrote: »

i hope it will be straightforward. they have been misdiagnosing me for about 13 years. (must be a world record for bladder/kidney infections. which they now know it wasn't) the decapeptyl has its pros and cons.
pro: pain relief
no/ very light period for 6 months
cysts didnt grow back till 8 months after.
cons
menapause(these are my symptoms i got)
night sweats,weight loss, and not been able to sleep
11 months after the first injection finally had my first full nights sleep last week (6 hours)
lack of energy but that was probably due to not having much sleep.

thanks for the info-good to know the pros and cons of different treatments for afterwards..sounds like a lot of cons involved in that one! I'm hoping to try to conceive after the op so wont be an option for me at the mo

I just want the effing cyst gone at this stage and my life back! Good to hear that yours was 12cm and they were able to do it through keyhole aswell..theyve told me they will attempt keyhole but more than likely due to size and location of cyst it will probably have to be open surgery so trying to prepare myself for that and if it ends up being keyhole it will be a big bonus

you've really been through the mill-13 years to get a diagnosis is crazy :mad: I was on the pill for a long time so they said that was probably masking the symptoms and I just thought the period pain to the point of fainting was 'normal'..

have you been waiting long for this lap? sorry for all the questions, just good to hear from someone who's a bit further down the road

lynp27 · 13-11-2013 10:07pm

starlight1 wrote: »

thanks for the info-good to know the pros and cons of different treatments for afterwards..sounds like a lot of cons involved in that one! I'm hoping to try to conceive after the op so wont be an option for me at the mo

I just want the effing cyst gone at this stage and my life back! Good to hear that yours was 12cm and they were able to do it through keyhole aswell..theyve told me they will attempt keyhole but more than likely due to size and location of cyst it will probably have to be open surgery so trying to prepare myself for that and if it ends up being keyhole it will be a big bonus

you've really been through the mill-13 years to get a diagnosis is crazy :mad: I was on the pill for a long time so they said that was probably masking the symptoms and I just thought the period pain to the point of fainting was 'normal'..

have you been waiting long for this lap? sorry for all the questions, just good to hear from someone who's a bit further down the road

Im hoping to conceive after as well. was told is was a possibility for the first year after surgery. was admitted to hospital last june (2012) with a cyst that had burst. they said they were send me for a lap to see if i had endo. had regular appointments for a scan once every 3 weeks after. when the cysts started growing back rapidly they immediately scheduled me for the lap in dec 2012. After waking up from the lap they said they didnt remove them just drained them and found the endo. then i was put on the depeptyal straight away to stop them growing back while awaiting surgery. i know there seems to be a lots more cons for the depeptyal but they were just my symptoms. but i'd much rather stay awake at night reading a book than be up all night in pain. was also given a tablet after a few weeks(cant remember the name) its hormones to control the hot flushes. so that helped a lot. mad to think people that get them injections have to go through menopause again. was bad enough first time.

starlight1 · 13-11-2013 10:31pm

lynp27 wrote: »

Im hoping to conceive after as well. was told is was a possibility for the first year after surgery. was admitted to hospital last june (2012) with a cyst that had burst. they said they were send me for a lap to see if i had endo. had regular appointments for a scan once every 3 weeks after. when the cysts started growing back rapidly they immediately scheduled me for the lap in dec 2012. After waking up from the lap they said they didnt remove them just drained them and found the endo. then i was put on the depeptyal straight away to stop them growing back while awaiting surgery. i know there seems to be a lots more cons for the depeptyal but they were just my symptoms. but i'd much rather stay awake at night reading a book than be up all night in pain. was also given a tablet after a few weeks(cant remember the name) its hormones to control the hot flushes. so that helped a lot. mad to think people that get them injections have to go through menopause again. was bad enough first time.

I know its crazy to think of going through the menopause not once but twice! and to suffer those symptoms but I know what you mean about getting respite from the symptoms..its the lesser of 2 evils I suppose

I dont want to rule anything out in terms of treatment and really dont know how bad mine is..I think usually with a big cyst it can mean that its fairly advanced so im not off to a good start..anyway will just have to wait and see what they find afterwards

glad to hear that they will keep scanning you after the op-one of my fears is to go through all that to get the cyst removed and then for it to just come back a few months later so at least if theyre keeping an eye on it they can see if it comes back..I had half imagined theyd remove it and send you on your way without any follow up. im on the list since beginning of aug as urgent and still no date yet so god help you if you needed something done quick

I had heard alright that you have a higher chance of conceiving in the year after the op so hopefully thats true for both of us

lynp27 · 13-11-2013 11:41pm

starlight1 wrote: »

I know its crazy to think of going through the menopause not once but twice! and to suffer those symptoms but I know what you mean about getting respite from the symptoms..its the lesser of 2 evils I suppose

I dont want to rule anything out in terms of treatment and really dont know how bad mine is..I think usually with a big cyst it can mean that its fairly advanced so im not off to a good start..anyway will just have to wait and see what they find afterwards

glad to hear that they will keep scanning you after the op-one of my fears is to go through all that to get the cyst removed and then for it to just come back a few months later so at least if theyre keeping an eye on it they can see if it comes back..I had half imagined theyd remove it and send you on your way without any follow up. im on the list since beginning of aug as urgent and still no date yet so god help you if you needed something done quick

I had heard alright that you have a higher chance of conceiving in the year after the op so hopefully thats true for both of us

will keep you posted on my progress. Am heading for the lap next week. have to be in for 7.30. its a around a 3 hour drive. so have my b n b booked.if you have any more questions just ask me. when i first found this thread a while ago i found it very helpful. everyones experience is different. hope all works out for you as well. best of luck over the next few months as it can be a long wait.

starlight1 · 14-11-2013 7:41pm

lynp27 wrote: »

will keep you posted on my progress. Am heading for the lap next week. have to be in for 7.30. its a around a 3 hour drive. so have my b n b booked.if you have any more questions just ask me. when i first found this thread a while ago i found it very helpful. everyones experience is different. hope all works out for you as well. best of luck over the next few months as it can be a long wait.

Thanks Lyn, appreciate the info, its great to talk to someone who understands

best of luck with the surgery, hope it goes well for you and please let me know how it goes when you're up to it

lynp27 · 14-11-2013 8:43pm

starlight1 wrote: »

Thanks Lyn, appreciate the info, its great to talk to someone who understands

best of luck with the surgery, hope it goes well for you and please let me know how it goes when you're up to it

will post my experience here.

bubbaloo · 15-11-2013 10:59am

Hi ladies,
I wasn't going to respond to this because I think sometimes telling my story can bore people to tears, but I can tell from reading your posts that maybe the voice of experience could throw some insght on things so here goes.....(it's going to be long and may be mind-numbing but you might get something from it)....
Started my periods at age 11 and they were "normal" enough - regular as clockwork every 28 days and painful and heavy but I could live with it. In 2002 we started trying for a baby - got pregnant after 3 months but miscarried at 8 weeks. We took a break after this - a lot of other drama in life so we waited. Then again in 2004 I got pregnant quickly but lost the baby at 6 weeks. This led me to demand some investigation with a gynae - he was beyond useless. He talked to me, scanned me and just threw a prescription for clomid at me for 6 months. Having bled continuously for 11 weeks I rang his office - he was too busy to speak to me and faxed me another prescription for clomid!!!
After 3 days of a migraine I decided to go to Napro - trying naturally for a baby but with fertility drugs. It's based on charting your cycle and taking lots of drugs for a lengthy period until finally (hopefully) everything comes together and you have your baby. My chart showed irregularities and scans showed a few large cysts so I was referred for surgery. I had my first laparoscopy in 2006 and the surgeon told me that I had no endometriosis (!!!) but my womb was tilted backwards, so he had put in a ring to keep it in position. 6 weeks later he removed the ring.
I continued with Napro and within a few months the cysts were back - bigger than ever so I decided to go for surgery again - to a different surgeon. I had my second lap in 2007 and was woken up to be told that I was riddled with stage 4 endometriosis and I would need to go on Decapeptyl for 3 months and have full open surgery - a laparotomy. So that's what I did.....
Recovered from the surgery and started charting again and taking the drugs. I also kept to a wheat free and dairy free diet and had acupuncture. 6 months of this resulted in a pregnancy and the most beautiful little boy you could ever lay your eyes on!

:) He's now 4 and a half!

Fast forward to when he was 18 months old. We decided to try again so off I went back to Napro, charting and drugging myself to the eyeballs. History repeated itself in that I had lots of cysts and I was referred for surgery. The surgeon recommended a laparotomy again and I just didn't think I was able for that. I cried for three days and then rang and asked him to agree to start with a laparoscopy and only do the laparotomy if he needed to. So he started with a laparoscopy and I was woken to be told that once again my body was completely covered in endo and that he wanted to remove my left ovary - he couldn't do the laparotomy because I hadn't consented to removal of my ovary. Out came the decapeptyl again and four months later I had my second laparotomy. In the end he didn't need to remove my ovary because when he removed the endometriosis my ovary looked ok.

Once again I recovered from the surgery, started charting and drugging again and fell pregnant again. Everything was going fine - I had two good scans but at my first hospital appointment, at almost 14 weeks, there was no heartbeat and our baby had died. He was a little boy and we buried him and named him.
That was the end of the road for us - we decided soon after that we weren't able to cope with any more. We were so very lucky to have our little boy and we should concentrate on living a great life with him.
So I have now found another surgeon and after consulatation, MRI scans and surgical notes he has concluded that I have extensive adenomyosis - which is stage 4 endo in the uterine wall - as well as severe endo on my left ovary. His suggestion is a hysterectomy and removal of my left ovary and I'm scheduled in for January. This is what I wanted when I went to him - I want the pain, the heartache and all the badness to go with it.
I take an enormous amount of drugs every month just to function when I have my period and this will change my life.

So, a laparoscopy is a day procedure. You go in early in the morning, bring a good book and pray you'll be called in quickly. All going well you'll be sent home in the same day with some answers. You will get pain in your shoulder because the gas they use to blow your stomach out during surgery gets trapped there. The only way to ease the pain is by moving around, even though that is the last thing you feel like doing. You will have 2 or 3 small incisions in or around your belly button and after 7-10 days you will be back on your feet.
Decapaptyl was good to me - I had some symptoms of menopause - a few hot flushes, frequent and urgent trips to the loo, and very dry skin. But I know a few others who suffered very badly with night sweats while taking it. My point is that everyone is different so try not to focus on the negative. The fact that I had no periods while I was on it was the greatest gift ever. My periods are unspeakable!!
So girls, I wish you the best and I hope you find the right surgeon who will give you answers to your questions.
Sadly in this game we have to be assertive and ask lots of questions to get information. Don't be afraid to ask questions - you have a right to know what's going on inside your body.
But at the end of the day, don't give up hope - miracles do happen.

In my experience, and that of others I know, physically women are in the best condition after surgery to conceive and have a successful pregnancy. It is a difficult road but you are not alone and it's healthy to talk about it. Feel free to ask me questions - either here or by pm.
Oh and sorry for the lengthy post!!

elly123 · 15-11-2013 1:37pm

Hey Bubbaloo,

I enjoyed reading your post, im sorry to hear about your miscarriages but also delighted you have your special little boy. I wish you the very best of luck with your surgery in January and hope it ends all your pain and suffering.

I have previously told my story here aswel, the short of it is... i was very young like you periods at 11 constant bleeding attended Gyne at age 12 had a d&c at 12 and had first of 4 laparoscopies at 15. I was on the decapaptyl for 6 months at 15 i had the hot flushes and became very hormonal (i.e i was a night mare to deal with)

I had been on every contraceptive pill imaginable none agreed with me i was also on a steroid aswel which i cant remember the name of at 14. I started the evra contraceptive patch after my second lap and my endo calmed down completely. Every so often it would flare up for a few months and i would go back to my gyne. We decided to try for a baby in Jan 2012 i went to the gynae in the Feb and she did a lap in march to clear the endo and flush out the tubes, I fell preg in the june/July and with a very uneventful preg i had my baby boy in March 2013 he is now 8months old and we call him our little miracle and every night i kiss him goodnight and i thank god for the this gift i was given and i tell my little man how special he is to his mammy & daddy! Although we didnt have trouble conceiving the taught that it might never happen haunted me from the age of about 20/21 when i knew i really wanted to have kids. Being told at 15 i wouldnt be able to conceive was like talking to the wall i was 15 the last thing i was thinking about was having a baby. After 8 months and back on the evra patch the last 3 months i have had no symptoms of endo, so i really hope my pregnancy has helped keep the endo at bay.

RE: the lap procedure you will be sore, and tummy swollen, my laps were always on a Tuesday so i would take the rest of the week off and would be fine to go back to work the following Monday, after the 4th lap i was up and out & about the next day, but after the first one it took a few days to get back on my feet. You will be fine, positive taughts and hopefully you will get some answers, best of luck with it xxx

starlight1 · 15-11-2013 9:44pm

bubbaloo & elly, thank you both so much for sharing your stories-you don't realise how helpful it is to hear from people who 'get it'.

Bubbaloo I am so sorry for your losses and can't even begin to comprehend how you deal with it and the fact that both yourself and elly have two little miracles who are cherished everyday gives me great hope.

I'm not diagnosed yet but resigning myself to an endometriosis diagnosis. I was quite a late bloomer! didnt start my periods until 15, remember missing days off school etc because they were quite bad and was put on the pill from about 18 which helped a lot. Fast forward a long time, came off the pill about 4 or 5 years ago, (wasnt ttc then) first 6 mths okay and after that period pain came back with a vengeance..fainting in the hairdressers is never good for business or morale

so it got to the point that I was dreading every period and afraid to plan anything around the time I 'might' be due.

anyway that coupled with other symptoms like spotting throughout the month, pain, bloating, incredibly painful smears, heavy periods and my instincts telling me this wasnt normal (despite for years thinking this was normal for me and I was just unlucky) I booked a private gynae appt. She did a transvaginal ultrasound and found a large cyst, most likely an endometrioma..referred in to hospital they did bloods, CA125 came back raised which I think is another indicator, sent me for MRI and basically theyre pretty confident its endo but obviously until I have the surgery they wont know the extent or damage caused. so on the waiting list as urgent and at this stage looking likely it will be after xmas

Due to size/location of cyst (against bowel) consultant thinks its most likely I will need laparotomy so will need to give consent for cystectomy, laparoscopy, laparotomy, and removal of ovary (cant remember technical term for this!). on the plus they will also do dye test to check condition of tubes. I was fairly upset after last appt as had got my head around idea of keyhole but open surgery possibility was a big shock and the fact that I might lose the ovary. My main concern is fertility as we have been ttc since last year.

anyway Im trying to stay positive and just deal with the fact that I wont know till I wake up whats happened which makes it harder to prepare mentally. Im at the point now where I just want the cyst gone as Im struggling on a daily basis so hoping it happens sooner rather than later.

Im so glad I informed myself about endo after my 1st appt as at the last one it was said v bluntly and no info given! If I hadnt been armed with my questions I would have come out none the wiser so its all the more reason why I'm so grateful to get your replies.

bubbaloo I wish you the best of luck with your surgery and I hope it gives you back some quality of life.

I might be back with more questions as my own journey progresses so really appreciate your responses!:)

bubbaloo · 18-11-2013 11:05am

HI Starlight and Elly - isn't it terrible how we have to be the ones to drag the information out of medical professionals. I think they're all quite clinical about things - they see this every day so they forget that for us it's the first time we're learning about endo and we're fighting emotionally as well as physically. Three miscarriages have definitely shown me that medical staff are cold and removed from it. Obviously I've met a few nurses along the way who have been fantastic but for those who are diagnosing and informing us, we're just another number in the book - handing out our hard earned cash to hear the truth.

Anyhooo, yes I was exactly the same as you - suffering in pain every month, sometimes every day, wretching while sitting on the toilet - at the thought of what was coming out - but this was all "normal" to me - I thought everyone suffered like this. And then by the time I realised I was different, it was so "run of the mill" for me that I barely noticed anymore.

Starlight - I believe your fertility could improved with the bad ovary removed. The source of the probem would be gone and I've heard lots of stories about the good ovary making up for it. I know one woman who has three kids - she had her ovary removed when she was 15 and she hasn't had any problems since. She got pregnant three times just by looking at her husband!! ;-)

Best of luck and as I said already - feel free to ask and share - it's how we learn from each other.

elly123 · 18-11-2013 11:56am

I love chatting to people who understand what i have been through as its very hard to explain to people who don't have a clue and are not too bother either!

When i look back, my teenage years were pretty much taken from me by endometriosis, i missed loads of school, suffered a little bit of depression without it ever been diagnosed, i would get really down in myself. I had to stop playing sport and give up swimming. I was swimming competitively and doing really well and i also played county camogie but it affected all that.

I was lucky in that my gp referred me to the coombe on my first visit to him and the GYNE i went to was brilliant. Once she diagnosed me she was excellent and really cared she's a professor and head of her Dept in the coombe and i always requested that i see her at my appts but when she was away i found the younger gynes very dismissive of my situation, or even after my laps if my gyne couldn't make it around one of her team would come explain and they were never as nice or as understanding as my gyne.

When we decided to try for a baby and i went back to my gyne i was called by a member of her team and during the appt she went and got my prof who was absoluetly delighted that we were starting this journey and she booked me in staright away for lap & dye of the tubes. Fast forward 5 months later i am 11 weeks pregnant and in severe pain, vomitting etc, went to gp he put it down to bug, pain got so bad i went to a&e in coombe sitting around for 4.5 hrs in agony puking etc. my gyne spots me on the corridor asks what i am doing there and is delighted to hear i am pregnant but sees the pain i am in, she had her clinics on a friday and she was finishing up, she changed into scrubs brought me into a seperate room, examined me scanned me and admitted me for 3 days, baby was fine it was something to do with my gall bladder. The guy i seen in a &e try to tell me i had a kidney infection, but i stood up for myself as i knew this wasnt a kidney infection.

Anyway i had initially gone semi private to have the baby and my gyne only deals with public so she switched me to her clinic and i have to say i got the VIP treatment all the time and felt like i was important and not just another number on the conveyor belt.

The Gyne that looked after me when i first attended the coombe at the age of 12 had delivered my older brother who is 28. She looked after me from the age of 12 and 15 years later she looked after me throughout my pregnancy and came to see me when my baby was born. She was absolutely genuinely delighted that we had our baby boy as her words where "back all them years ago we never taught we would see this day.... i can finally retire now"

And I was a public patient.....

I know from reading & hearing other peoples experiences with gps & consultants a lot of medical staff are not educated enough about endo and that's why they are dismissive of the situation, i think its really important to get in front of the right person...but that is easier said than done.

Only you know your own body so therefore do not let medical staff brush you off.

starlight1 · 18-11-2013 10:16pm

Hope you had a good weekend girls

My 1st appointment with the gynae team was really positive-not rushed, a lot of time going through history etc, was with a junior doc who was very gentle during the exam etc. fast forward to my last appointment and I saw the 'head honcho'..lacking in bedside manner would be an understatement..now Ive no problem in hearing things bluntly but she was lacking in compassion completely. thank god I had armed myself with info or I would have been completely in the dark and even more shell shocked coming out.

Elly Im so glad that you have had such a positive experience with your consultant, that gives me hope that there are doctors who genuinely care and want to make things better for us. I'll stick with where I am until I have the op but wont rule out maybe being referred on somewhere else if I do get an endo diagnosis. I'm presuming even if you are in the public system you can request to be referred elsewhere? I wouldnt mind even paying privately for an initial consultation or two if it meant I was seeing a good person.

Bubbaloo you've really made me think much more positively about maybe losing an ovary-I know that sounds weird but if its the source of the problem and not working anyway, well whats the point in losing sleep over it being removed

Fingers crossed the other one will be okay and at least I'll know where I am. And hopefully the other will compensate somewhat if one goes

I'm wondering if either of you know about stages of endometriosis and endometrioma/chocolate cysts. from what I can see if there is a large endometrioma it is more likely to be an advanced stage of endo? Its just that I havent even had the surgery which I know is the gold standard for diagnosis but they seem fairly certain thats what it is..I suppose as the cyst is so big and coupled with the MRI and elevated CA125 levels they can pretty conclusively say thats what it is.

I think at the beginning I was so focused on the surgery for the cyst I was forgetting that it might be an underlying condition so Im only really getting my head around that now.

allym · 25-11-2013 12:48am

Hi guys,

Been reading some of your posts and it's great! Lots of good information!

I have one question though which I hope some of you with more experience might be able to answer!

I'm scheduled for a laparoscopy next week and have only taken the day of and the day after off work as the doctor said that should be fine that I'll just still be a little dopey the day after from the anesthetic.

In your experience is this generally the case? Or do people find they need more time off? I've a presentation scheduled for 2 days after and I'm now worried that I may not be up for it!
Also has anyone ever had problems getting Certs to cover them? I'm going to ring the hospital tomorrow anyway to see what the story is!

JillyQ · 25-11-2013 1:29am

allym wrote: »

Hi guys,

Been reading some of your posts and it's great! Lots of good information!

I have one question though which I hope some of you with more experience might be able to answer!

I'm scheduled for a laparoscopy next week and have only taken the day of and the day after off work as the doctor said that should be fine that I'll just still be a little dopey the day after from the anesthetic.

In your experience is this generally the case? Or do people find they need more time off? I've a presentation scheduled for 2 days after and I'm now worried that I may not be up for it!
Also has anyone ever had problems getting Certs to cover them? I'm going to ring the hospital tomorrow anyway to see what the story is!

You should be ok. I was held in over night and let out the next day, back to work 2 days later.

lynp27 · 25-11-2013 3:20pm

Hi all, my story
I went for my lap last wed. Was told i should be out that night and will be fine in a day or 2. however went down to the theatre before 9.30am and was put under. i was awoken at around 1.30 by the surgeon who was talking to me and she said they were keeping me overnight. the surgeon came back around that evening and talked to me again as she said i probably didnt remember talkling to her earlier. (which i didnt remember, only the bit bout me staying). She said she had to do a lot of work in there and i was on the table for just under 3 hours.she also said she didnt get to remove it all and will have to come back for another in the future.I wasnt allowed out of bed as had a drain and a catheter in. they took these out the next day and still wasn't allowed home. they gave me physio sheets and gentle exercises to do in bed. i am to stay on rest for 2 weeks and they said it will take up to 6 weeks to heal. this is day 5 and am feeling a lot better. moving along quicker than they said. just thought i'd fill you in on my story as i has pny booked 3 days off work. but due to my flexible schedule and cool boss. have been given as long as i want.

allym · 25-11-2013 6:49pm

Thanks so much guys. I rang the hospital this morning and spoke to a midwife who said I'll need at least 3-4 days off, and she doesn't know why the doctor told me otherwise.
Bit of a pain but sure hey!

starlight1 · 25-11-2013 9:13pm

allym wrote: »

Thanks so much guys. I rang the hospital this morning and spoke to a midwife who said I'll need at least 3-4 days off, and she doesn't know why the doctor told me otherwise.
Bit of a pain but sure hey!

ah at least you know what to expect now ally and from what I can gather its very much an individual thing in terms of recovery etc. Hard to know until they get in exactly what they need to do, so difficult to plan time off!

I couldn't offer much advice as Im on the waiting list for my op so am also learning from the more experienced! when are you due to have yours? hope work will be okay with it but at least they know in advance now that you cnat do the presentation

starlight1 · 25-11-2013 9:16pm

lynp27 wrote: »

Hi all, my story
I went for my lap last wed. Was told i should be out that night and will be fine in a day or 2. however went down to the theatre before 9.30am and was put under. i was awoken at around 1.30 by the surgeon who was talking to me and she said they were keeping me overnight. the surgeon came back around that evening and talked to me again as she said i probably didnt remember talkling to her earlier. (which i didnt remember, only the bit bout me staying). She said she had to do a lot of work in there and i was on the table for just under 3 hours.she also said she didnt get to remove it all and will have to come back for another in the future.I wasnt allowed out of bed as had a drain and a catheter in. they took these out the next day and still wasn't allowed home. they gave me physio sheets and gentle exercises to do in bed. i am to stay on rest for 2 weeks and they said it will take up to 6 weeks to heal. this is day 5 and am feeling a lot better. moving along quicker than they said. just thought i'd fill you in on my story as i has pny booked 3 days off work. but due to my flexible schedule and cool boss. have been given as long as i want.

Thanks for letting us know how you got on lyn. I hope you are recovering well and are taking it as easy as possible and are being well looked after

How are you feeling about it now? probably takes a while to sink in Id imagine too. did they manage to do it through keyhole?

Great that your boss is being so flexible-one less thing for you to worry about

starlight1 · 18-01-2014 7:55pm

Hi

As suspected, I have been diagnosed with severe/extensive endometriosis after a lap last week to remove a very large endometrioma/chocolate cyst.

The consultant is recommending that I start immediately on the Prostap injection. I was just wondering if anyone has any experience of this medication and how you found it?

Will obviously be discussing in more detail with gynae/GP and know it can be an individual thing but was interested to hear firsthand experiences from other ladies....

Lainey89 · 03-02-2014 12:15pm

Hey Ladies. I hope everyone is doing well. I thought I'd add an update having been to a new consultant twice now.
I'm in under the public scheme so I haven't actually been able to see the endo specialist himself yet but have seen two members of his team who were nice. I did feel I was getting a bit of mixed information tho as one told me endo isn't at all hereditary and the second one said it seemed that it was/could be. I told them I wasn't pushed on going on any hormonal based medications but they convinced me to try Provera (synthetic progesterone) for 3 full months.

I just about managed the 3 months as I had a lot of side effects including hair loss, slight eye sight disturbance and generally feeling like I didn't want to be touched. It did reduce the bleeding but not the pain by much so I wouldn't go back on it again.

Fast forward to December and I was off the Provera for about 10 weeks and was attempting to manage my endo with pain killers only. This plan doesn't appear to be working well for me. I had to defer all my exams as I was in so much pain. I had to leave my first exam early and was made go talk to the nurse and paramedic that were at the exam hall. Turns out the paramedic's wife has endo too and he was so nice and understanding!

I've decided to go back on the pill until I finish my Master's so I can get through my course work and exams without too much inturuption. I have another appointment with the consultant in April in which I think I will ask about the possibility of surgery and an IUD. Has anyone had trouble with adhesions or found an IUD in any way helpful to them?

starlight1 · 04-02-2014 10:07pm

Lainey89 wrote: »

Hey Ladies. I hope everyone is doing well. I thought I'd add an update having been to a new consultant twice now.
I'm in under the public scheme so I haven't actually been able to see the endo specialist himself yet but have seen two members of his team who were nice. I did feel I was getting a bit of mixed information tho as one told me endo isn't at all hereditary and the second one said it seemed that it was/could be. I told them I wasn't pushed on going on any hormonal based medications but they convinced me to try Provera (synthetic progesterone) for 3 full months.

I just about managed the 3 months as I had a lot of side effects including hair loss, slight eye sight disturbance and generally feeling like I didn't want to be touched. It did reduce the bleeding but not the pain by much so I wouldn't go back on it again.

Fast forward to December and I was off the Provera for about 10 weeks and was attempting to manage my endo with pain killers only. This plan doesn't appear to be working well for me. I had to defer all my exams as I was in so much pain. I had to leave my first exam early and was made go talk to the nurse and paramedic that were at the exam hall. Turns out the paramedic's wife has endo too and he was so nice and understanding!

I've decided to go back on the pill until I finish my Master's so I can get through my course work and exams without too much inturuption. I have another appointment with the consultant in April in which I think I will ask about the possibility of surgery and an IUD. Has anyone had trouble with adhesions or found an IUD in any way helpful to them?

Hey Lainey,
Apologies I am newly diagnosed so not any help in terms of your question on the IUD..Hopefully someone else will be able to help you.

I've just started on the prostap injection-too early to tell about pros/cons but am hoping it will give some relief and also an opportunity for things to calm down a bit after my lap..

I too am in the public system and my experience has not been great so far. If you don't mind sharing would you let me know who the endo specialist you are attending is and which hospital? I am looking into other docs at the moment and am hoping to move at some point if I can.

Good luck with your appointment in April and I hope you get some relief soon

Little Miss! · 05-02-2014 1:51pm

Lainey89 wrote: »

Hey Ladies. I hope everyone is doing well. I thought I'd add an update having been to a new consultant twice now.
I'm in under the public scheme so I haven't actually been able to see the endo specialist himself yet but have seen two members of his team who were nice. I did feel I was getting a bit of mixed information tho as one told me endo isn't at all hereditary and the second one said it seemed that it was/could be. I told them I wasn't pushed on going on any hormonal based medications but they convinced me to try Provera (synthetic progesterone) for 3 full months.

I just about managed the 3 months as I had a lot of side effects including hair loss, slight eye sight disturbance and generally feeling like I didn't want to be touched. It did reduce the bleeding but not the pain by much so I wouldn't go back on it again.

Fast forward to December and I was off the Provera for about 10 weeks and was attempting to manage my endo with pain killers only. This plan doesn't appear to be working well for me. I had to defer all my exams as I was in so much pain. I had to leave my first exam early and was made go talk to the nurse and paramedic that were at the exam hall. Turns out the paramedic's wife has endo too and he was so nice and understanding!

I've decided to go back on the pill until I finish my Master's so I can get through my course work and exams without too much inturuption. I have another appointment with the consultant in April in which I think I will ask about the possibility of surgery and an IUD. Has anyone had trouble with adhesions or found an IUD in any way helpful to them?

pm sent

starlight1 · 06-02-2014 6:36pm

Hope its okay to post this here..Thought it may be of interest to others

The endometriosis association of Ireland are holding an information day in the Spa Hotel Lucan on Saturday 8th March

Speakers include:
Dr David Hunter (Endo Specialist-Belfast)
Dian Shepperson Mills (Endo nutritionist)
Kathleen King (Endo Patient)

daisydotty · 08-02-2014 1:11am

hello to everyone!
Im just 3 days after my 3rd lap (Tuesday). first was elective in 2011 to have the endo diagnosed (after many years of misdiagnosis!!). He said it was severe pelvic endo and he cleaned up what he could. Had lots of adhesions involving the bowel. but I managed well after with the pill and painkillers. Had an emergency lap july 2013 for a ruptured endometrioma-Consultant took me to theatre and said that I had lots of adhesions and basically it was beyond his level of expertise and referred to me his colleague as my previous consultant had retired.
Saw her in Sept and she did a full exam, scan, history etc and recommended a lap which I had last tues in CUMH. Was admitted for 745. In theatre at 1030 and woke at sometime around 2 (but apparently id been awake but complaining of lots of pain). Had 6 top ups of morphine (i only remember 2!!) in recovery and was taken back to the ward. Id a drain in and was quite sore but was well looked after. I ended up staying for 2 days as the drain didn't come out until 30 hours later because it was draining a fair bit of blood but once it was out wed evening i was a new person and went home yesterday morning. not feeling too sore and taking it easy. have 3 weeks booked off work (im a nurse). She came back the evening of my op with her team and basically said she did what she could - my rectum (:eek:) was badly stuck to my uterus and she couldn't separate it safely (fair enough and it explains the unbearable bowel pain i get). She freed up the ovaries and ran some dye through the tubes-left blocked and right maybe partially blocked but dye did flow. cleaned the endo up as best she could and drained a few cysts but said the endo was quite active and extensive and recommended decapeptyl. Unsure about it and we had discussed it at before. So i have the prescription and the pharmacy are ordering it in. she also prescribed me livial which will hopefully help with any side effects. nervous about starting it but will give it a go.
I did ask about fertility and she said in her opinion it will be in issue for me but we can talk about that again (its not that its not important to me but im single and 32 so its just about trying to preserve it). would love to attend that endo day in Dublin but think im going to be away. anyway hope ye are all doing ok xxx

starlight1 · 08-02-2014 9:36pm

Hi daisy,
Hope you are recovering well and not in too much pain..sounds like you were in a lot of pain in recovery and afterwards..OUCH! Take as much time as you need to recover especially as Id imagine your job is very physical.

great that they managed to free up the ovaries..I just had lap a few weeks ago where I was diagnosed with severe/extensive endo but pretty sure they just took out a large cyst so am hoping that they will also maybe attempt to free up my ovaries at some stage too so positive to hear it worked for you

Just on the decapeptyl-I was prescribed prostap which from what I gather is pretty similar. I debated about it for a few weeks but got the injection earlier this week and am hoping that benefits will outweigh the negatives..only time will tell but I understand how you feel about taking something like that. I kind of feel like if I didnt at least give it a a chance I would regret it so hopefully its not too bad..when are you due to start it?

Im hoping to attend the endo information day and have no problem at all passing on any information that might be of help if you are unable to make it..just let me know

daisydotty · 12-02-2014 2:22pm

Hi Starlight!
Well i'm 8 days now and doing well. minimal pain to be honest-just taking paracetemol as needed. and taking it easy!!Am bleeding a little too but they did a fair bit of poking around so its to be expected I suppose. Yes the pain in the recovery room was terrible but well relieved by the morphine!!!

Well the pharmacy rang yesterday to say the decapeptyl was in so going to collect that later on. I didn't realise the price was over 1000 euro but the DPS card covers it so 144 euro. its an injection every 3 months so what i'm dreading is if I do get really bad side effects i've to put up with it for the 3 months. but nothing ventured nothing gained!!ill give it a go and I received my follow up appointment in CUMH for end of march.

The consultant said I can start it at anytime as i'm on the pill anyway-I don't have to wait for my next period. I've pre-warned family and friends that I could turn into a hormonal monster though!!!im hoping to get back to work around the 27th feb. I drove to the local shop on Monday and got on grand. Hoping your doing well and thank you so much for the offer of the info from the Endo day in March. You're a gem. Any info would be great. Hoping theres one in Cork soon because I would def make it my business to go.

starlight1 · 13-02-2014 8:47pm

hey daisy,
glad to hear you're taking it easy..someone reminded me to remember that we're healing on the inside aswell as the outside and it kind of helped me to not overdo it..Is amazing how much even a few days helps on the recovery but take your time. I bled aswell for about 5-6 days which started about 2 days after the op so seems to be fairly standard for most people.

Will be good to hear how you get on with the decapeptyl. Have you had the injection yet? I was prescribed prostap after my lap which I think is very similar. Got my first 3 month injection about a week and a half ago (after dithering about whether to take it for about 3 weeks) so not too far ahead of you. Like you was very anxious about taking it but am hoping benefits outweigh the negatives and so far so good. Good thing about the 3 month injections is we will only need to pay the dps 144 twice instead of each month!

no prob at all to let you know how the endo information day goes

Enc · 16-02-2014 1:51am

My friend was diagnosed the same time as a friend of hers. She had 2ops and her friend has had 6 and part of her bowel removed. My friend had the coil put in and given the pill at the same time. This stopped the endometriosis coming back. Her friend has finally seen one of the top endo specialists and has been given the coil and pill and had finally got a hold on it.
Both were in a lot of pain and missed a lot of work and took a lot of strong pain killers.
They were both fine until they came off the pill and that's when their endometriosis really kicked in

Enc · 16-02-2014 1:53am

And before the coil my friend was also on decopectal excuse spelling but it was the coil and pill together which worked

Lainey89 · 24-02-2014 2:01pm

Hey guy. I had a rough week last week. Ended up being ambulanced to A&E last Tuesday evening (great way to spend your bday!) with severe lower right side abdominal pain and vomiting. I was pretty sure it was my appendix and not endo related but the doctors seem to think otherwise. I was admitted and had an ultrasound on the Wednesday and a CT scan with contrast on Thursday. Both scans were completely fine as were my bloods despite the fact morphine was the only thing that took the pain down to a manageable level. I got discharged on Friday with no answers.

This is not the first time this has happened but it is the worst it has been. I thought it was just general crampiness but the level of pain shot up really fast this time. Has anyone else had repeated bouts of really localised severe pain in their lower right abdomen?

LegacyUser · 24-02-2014 2:07pm

I've been hospitalised twice since November with lower right side pain. First time they kept me in as they suspected appendix as well. They found a cyst on my right ovary and also said that my ovary is lying very closely to my uterus and that could be causing me problems. I was discharged and they were happy that it wasn't the appendix so there list was ticked off. i had a repeated ultrasound and the cyst is gone, last week, same thing - severe right side pain - nausea but no vomiting and diarrhea (Possibly TMI for a week). i tried to sit on it, worried I might start to look like a hypochondriac. Ended up in A&E again (haven't told anyone) bloods normal, urine normal discharged and told it was possibly gastroenteritis. Not convinced, had the pains for a week only really settling today. I feel a bit like I'm not being taken seriously

ohiknow · 25-02-2014 1:40am

I have. Sounds very similiar. Very bad pain in the lower right abdomen. I have been to a&e twice in the last few months the pain has been so severe. First time was November, they suspected appendicitis and admitted me for observations. They did an ultra sound and going a cyst on my right ovary. They also said the right ovary is very close to my uterus and could be causing problems. Have had another ultrasound since and the cyst was gone. I was back in a&e on Wednesday night with the same thing. Lower right side. No vomiting but nausea and diarrhoea. I had it from Sunday and succumbed late Wednesday night. Was very scared by then. They discharged me with gastroenteritis or something similiar. The pain has really only settled today. I've been put back on the pill so really thought none of this was supposed to happen! I've spent most of the night crying, damn hormones! Not sure where to take it next. Hope you are feeling better

Enc · 25-02-2014 2:07am

Oh no!!!
My friend was getting sick too with pain and also needed strong opioids! When they did the op they could tel her her ovaries were stuck one to the bowel and the other to the pelvic floor. And also her womb was also dragged down. She had a clear up of the endo. She also had some adhesions. Which can cause pain u get them after ops. And they can relieve them by ops but which can also cause more.
What hospital did u go to what consultant are you under? And what treatment are they doing for you now? From hearing from others with endo who went to various consultants Hugh o Donnell n dub is the best there's an SNIP she's supposed to b a good surgeon but personally if someone doesn't understand or believe your pain get rid of them!!
I have numerous consultants myself I had ovarian cancer 5 years ago when I was 22 so although I don't know exactly wat I'm talking about with endo I sure as hell know bad consultants from good ones and understand pain etc!
My friend was under Dr Derham in Gal Bon Secour he looked after her v well from endo point of view took her friend to go through 5 and have 5 ops for him to put her on coil and pill like dr Derham had already done. SNIP

Hope this helps. Make sure you have a good Gp too.
Emer

JillyQ · 25-02-2014 12:12pm

Enc wrote: »

Oh no!!!
My friend was getting sick too with pain and also needed strong opioids! When they did the op they could tel her her ovaries were stuck one to the bowel and the other to the pelvic floor. And also her womb was also dragged down. She had a clear up of the endo. She also had some adhesions. Which can cause pain u get them after ops. And they can relieve them by ops but which can also cause more.
What hospital did u go to what consultant are you under? And what treatment are they doing for you now? From hearing from others with endo who went to various consultants Hugh o Donnell n dub is the best SNIP but personally if someone doesn't understand or believe your pain get rid of them!!
I have numerous consultants myself I had ovarian cancer 5 years ago when I was 22 so although I don't know exactly wat I'm talking about with endo I sure as hell know bad consultants from good ones and understand pain etc!
My friend was under Dr Derham in Gal Bon Secour he looked after her v well from endo point of view took her friend to go through 5 and have 5 ops for him to put her on coil and pill like dr Derham had already done. SNIP

Hope this helps. Make sure you have a good Gp too.
Emer

My first Gynie was Derham as well in the Bons had three ops with him and changed for my last one. Do you mind me asking are you going to another Gynie?

Enc · 25-02-2014 12:34pm

I am under a gynae oncologist in St James in dub. Dr Gleeson. I had one op under her and they are years ahead of galway. I don't know if she deals with gynae patients I think it is just cancer.

I am also under two other consultants there one is Dr Phelan and don't know other name. One is a endocrinologist and the other is a reproductive specialist or something. I'm not overly fond of them... But they are prob good.. If it was me I would be trying to get to see Dr Hugh. And maybe see if you could see Dr Gleeson.
SNIP

JillyQ · 25-02-2014 12:42pm

Enc wrote: »

I am under a gynae oncologist in St James in dub. Dr Gleeson. I had one op under her and they are years ahead of galway. I don't know if she deals with gynae patients I think it is just cancer.

I am also under two other consultants there one is Dr Phelan and don't know other name. One is a endocrinologist and the other is a reproductive specialist or something. I'm not overly fond of them... But they are prob good.. If it was me I would be trying to get to see Dr Hugh. And maybe see if you could see Dr Gleeson.

Im sorry to hear you have gone through so much I have been through four gynies myself, one of them here was so arrogant, he told me the only solution was to have everything removed. I told him he didnt know what he was talking about. Got up and walked out of his office and straight back to my GP she then referred me to Dr. Boyd in the Mater who I found wonderful, he told me that I would need surgery again, but only a myomectomy (spelt wrong) and told me to go back to Dr. Declan Egan here in Galway. Jugding by the way things are going at the moment i will be going back to him again soon.

Lainey89 · 25-02-2014 8:36pm

Sorry to hear your story Enc. I am familiar with the whole trying to get consultants to listen to you dance. I agree that finding someone who understands pain is crucial. I ranked the pain an 8 out of 10 last Tuesday when I went in to A&E via ambulance and they put me out in the general waiting room for 5 hours before they offered me paracetamol. An hour after that I finally got to see a doc and got a shot of morphine. Cue instant pain reduction.

On the Wednesday the pain flared up when they were bringing me down for an ultrasound. I think it was the sitting up for so long that did it. I vomited a few times and even the weight of the blanket was too much pressure on my stomach. Then I had the ultrasound technician pressing down on my stomach for about 15 mins doing the actual scan. Not my finest moment with all the shaking and crying. Hands down the worst the pain has ever been. My boyfriend showed up about 20 mins after I was back in my bed and and I still hadn't gotten any pain relief. When it did come it was paracetamol until I yelled at them for something stronger. The boyfriend is not impressed with the Irish medical system to say the least!

I've had several ultrasounds including an internal, an abdominal MRI and 2 abdominal CT scans in the last 7 years. Nothing has ever shown up on them. On paper I'm medically the picture of health. The highest my white blood count has been upon hospital admission is 9.8. I had adhesion removal surgery 2 years ago (done by a gastro, Prof. Walsh in the Hermitage) but this pain feels different to how that felt. I am in James' under Dr. Hugh O' Connor but I haven't actually seen him yet, just members of his team. The earliest I can get in to see them again is the 11th of March so I hope the pain stays manageable until then

sam34 · 26-02-2014 2:32pm

enc, I've snipped your recent posts (and other posts that quoted them). please don't post derogatory and defamatory statements about identified third parties here- you could leave boards.ie (and yourself) open to a lot of hassle.

sam34 · 27-02-2014 9:56am

enc, I've deleted another post of yours. please don't give medical advice, particularly around dosages of prescription drugs. you're not qualified to do that, and even if you were, offering such advice online is irresponsible. please read the forum and site rules before posting again.

Lainey89 · 11-03-2014 7:56pm

I was t the gyny today after last months stint in hospital. Today's advice was: Period pain is common and I should get on having a baby soon as it makes endo better...

ohiknow · 11-03-2014 7:58pm

That's disgraceful! I've been told that too. Hope you are ok

JillyQ · 11-03-2014 9:21pm

Lainey89 wrote: »

I was t the gyny today after last months stint in hospital. Today's advice was: Period pain is common and I should get on having a baby soon as it makes endo better...

I cannot believe they are still giving that advice. I was told that over 25 years ago. You need to change your gynie.

Lainey89 · 11-03-2014 10:39pm

Thanks guys. I've just turned 25 and I reckon the Dr. I saw today was at most 5 years older than me. She's not a consultant but she's working under him in the public system. I'm going to make a private appointment at this point tho.

She pretty much said Stage 1 endo wasn't all that bad (which I know from a physical and structural standpoint it isn't) but we all know staging has little to do with pain. I got the impression she was trying to push me into agreeing to go back on the Pill, when I've been on 5 different ones in the past 8 years and feel so much better off it. According to the Dr. having a baby makes the endo settle down, which having talked to my mother you might get a year or so while you don't have any periods but everything comes back at some point.

Has anyone ever walked out of a Drs. office after being told stuff like this? I know how I feel but when medical staff start talking like that there's always the little voice in the back of my head that starts to doubt that how I feel is as bad as it is.

JillyQ · 11-03-2014 11:01pm

Lainey89 wrote: »

Thanks guys. I've just turned 25 and I reckon the Dr. I saw today was at most 5 years older than me. She's not a consultant but she's working under him in the public system. I'm going to make a private appointment at this point tho.

She pretty much said Stage 1 endo wasn't all that bad (which I know from a physical and structural standpoint it isn't) but we all know staging has little to do with pain. I got the impression she was trying to push me into agreeing to go back on the Pill, when I've been on 5 different ones in the past 8 years and feel so much better off it. According to the Dr. having a baby makes the endo settle down, which having talked to my mother you might get a year or so while you don't have any periods but everything comes back at some point.

Has anyone ever walked out of a Drs. office after being told stuff like this? I know how I feel but when medical staff start talking like that there's always the little voice in the back of my head that starts to doubt that how I feel is as bad as it is.

I did walk out of a dr's office a couple of years ago. What part of the country are you in?

Lainey89 · 11-03-2014 11:11pm

Dublin. My boyfriend is from Belgium and after recent experience of the Irish medical system I am seriously considering becoming a health tourist.

JillyQ · 11-03-2014 11:19pm

Lainey PM sent

ohiknow · 12-03-2014 1:23pm

Ladies, quick question. Do any of you suffer with mid cycle pain. I am crippled with pain in my lower abdomen again. I had my period 2 weeks ago. I have the start of diarrhea now as well. This has been happening a lot. I ended up in A&E last month with the pain and was told it was probably gastroenteritis. Anyone else have this experience?

Lainey89 · 12-03-2014 9:38pm

ohiknow wrote: »

Ladies, quick question. Do any of you suffer with mid cycle pain. I am crippled with pain in my lower abdomen again. I had my period 2 weeks ago. I have the start of diarrhea now as well. This has been happening a lot. I ended up in A&E last month with the pain and was told it was probably gastroenteritis. Anyone else have this experience?

I have. I figured out it was ovulation pain. It is generally only painful in a sharp way for a day or so with me and manageable with the medication I have for pain. If you are on the pill it could still be that as there is a small percentage of women who still ovulate while on it.

ohiknow · 12-03-2014 11:01pm

Hi, thanks for the reply. I am on the pill. I had noticed ovulation pain that was almost like a stitch. I've been keeping a diary so put it down to that when I looked at my cycle. The pain has changed though, it goes on for days and I get really sick from it

starlight1 · 15-03-2014 9:00pm

Lainey I hope you are feeling okay and absolutely agree that you should consider expertise elsewhere if you can...makes me so angry when gynaes who you would imagine would have half an idea of the impact of endo are so dismissive of your pain..:mad: Like whatever about a GP but this is someone who should have half a clue about the condition. I actually think its quite frightening that you are more or less being told to get on with it..I bet she wouldnt be so quick to suggest getting on with it if she had to experience what you do. All I can say is try not to let them make you doubt yourself-easier said than done I know but YOU are the expert on your own body not them so make sure you are happy with decisions that are being made

ohiknow yes from what I can gather mid cycle pain can be quite common in endo sufferers. definitely sounds like theres a link to ovulation there from the timelines and pattern you seem to have observed. Also I know that bowel issues seem to be part and parcel of this lovely condition! I know people have been misdiagnosed with ibs when actualy was all connected to endo. Are you under care of gynae team? could be worth keeping little diary of frequency etc and mentioning it at next appointment. Other thing that might or might not be helpful is looking into the endo diet? I was at the information day last weekend and there was a speaker on nutrition and how it can help minimise some of the symptoms for some people. Appears to be very restrictive though.
Anyway Im happy to copy the presentation she gave on the day and send it on if it would be helpful to you or anyone else..just let me know

endometriosis... help!

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