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endometriosis... help!
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Hi,
I was hoping to get some recommendation for a specialist in endometriosis in the Cork or Dublin area.
Been through the mill the last year or so. 10 day periods, passing out from the pain. I was away at college and in with GPs that weren't overly sympathetic. Finally moved back to be near my GP. She is amazing! Went in yesterday after a weekend of agony and visits to southdoc. This thread and people on it have been an amzing resource for me. 17 pages of support and other peoples experience was a great distraction
My GP was straight onto it. After reading other people experience I was worried about having a battle on my hands. She mentioned Endometriosis first so that was a huge relief. She has told me there is a huge waiting times for specialists in this area. So I was hoping I might be able to get recommendations for both public and private in Cork or Dublin area. Please PM with details if you can help?0 -
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Finally got my appointment for a lap to remove the endo in CUMH. have been told its severe form. anyone know how long it takes. booked 3 days off work.
Hi lynp27
sorry I dont have any advice for you-am in the same boat, waiting for a date for surgery. From my research I think it really depends how much work they do when they're in there and its hard to tell beforehand. Is it keyhole you are scheduled for?
Good luck anyway and please let us know how you get on 0 -
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starlight1 wrote: »Hi lynp27
sorry I dont have any advice for you-am in the same boat, waiting for a date for surgery. From my research I think it really depends how much work they do when they're in there and its hard to tell beforehand. Is it keyhole you are scheduled for?
Good luck anyway and please let us know how you get on
Yes they said will try keyhole first but they won't know till then. Said i have the very severe form.0 -
Yes they said will try keyhole first but they won't know till then. Said i have the very severe form.
Have you had a laparoscopy before? I thought that was the only way to diagnose endometriosis as it doesnt usually show up on ultrasounds etc unless there is a cyst there
If they're confident you have the severe form I think you might be looking at needing to take more than 3 days off work. Dont mean to freak you out but if its severe and they have to do a bit of work when in there you may be putting yourself under pressure to go back to work that quick depending how physical your job is. I could be talking crap cos I havent had the surgery yet but just from my info you might need a bit longer. Hopefully someone who's experienced it will come along and give you info based on real experience
I've been told that if laparoscopy (keyhole/usually day procedure) cant be done they will do open surgery (laparotomy/longer hospital stay) and this will be longer recovery again. I'm having large cyst removed tho so is prob different to you
Have you any more appointments with hospital before surgery?could be worth contacting them or even GP about what time to allow for recovery as they will be familiar with your individual case 0 -
starlight1 wrote: »Have you had a laparoscopy before? I thought that was the only way to diagnose endometriosis as it doesnt usually show up on ultrasounds etc unless there is a cyst there
If they're confident you have the severe form I think you might be looking at needing to take more than 3 days off work. Dont mean to freak you out but if its severe and they have to do a bit of work when in there you may be putting yourself under pressure to go back to work that quick depending how physical your job is. I could be talking crap cos I havent had the surgery yet but just from my info you might need a bit longer. Hopefully someone who's experienced it will come along and give you info based on real experience
I've been told that if laparoscopy (keyhole/usually day procedure) cant be done they will do open surgery (laparotomy/longer hospital stay) and this will be longer recovery again. I'm having large cyst removed tho so is prob different to you
Have you any more appointments with hospital before surgery?could be worth contacting them or even GP about what time to allow for recovery as they will be familiar with your individual case
hi starlight. had a lap done less than a year ago to remove a 12cm cyst, and a smaller one this is when i was diagnosed with endo. was put on decapeptyl. I also had regular hospital an gp visits. Asked my Gp and as usual i got the whole speech about they don't know till that day, but i "might" be allowed home that evening.0 -
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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 0 -
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 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 us0 -
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 0 -
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.0 -
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!!0 -
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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!:)0 -
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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.0 -
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.0 -
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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 0 -
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 about0 -
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