endometriosis... help!

JillyQ

Danniboo wrote: »

I explained that to her at my appointment today, so she said that she'd put me on the ponstan for 3 months and bring me back, see how I go. They said if that doesn't work they'll try some injection that induces menopause like symptoms for a few months.

I could be wrong but that sounds awfully like Danzerol which i was on. I had the injection form before they did my first myomectomy. Then i was on the tablet form for a few years. Came off it. If it is it be prepared for pretty harsh symptoms.

Danniboo

What type of symptoms are we talking?

JillyQ

Danniboo wrote: »

What type of symptoms are we talking?

For me i had quiet bad hot flash's felt like my face was burning up and poured with sweat, when they happened. General feeling of sickness all the time. I also got a slight facial hairgrowth which disappeared after i was taken off the injections.

Danniboo

JillyQ wrote: »

For me i had quiet bad hot flash's felt like my face was burning up and poured with sweat, when they happened. General feeling of sickness all the time. I also got a slight facial hairgrowth which disappeared after i was taken off the injections.

Yeah think i'll be skipping that i've battled with the facial hairgrowth for years.

elly123

Danniboo wrote: »

What type of symptoms are we talking?

Hey I had the injection at 16 I had two of them they last for 3months. It stops everything! I had really bad hot flushes and also really bad mood swings. When I look back I don't know how my mother put up with me and been in secondary school made it even tougher.

I've had 4 laps a d&c and was on every type of pill you can name eventually after 14 yrs of endo pain it eased off in the last 4 years. I had my 4th Lap march 2012 while trying to conceive. 3months later I was preg. I am now the proud mother of a 12 week old baby boy, no pregnancy complications, I haven't had a period yet post preg & part of me is dreading when it does come but I'm hoping the endo stays away!

I wish you the best of luck with whatever decision you make and I hope it gets easier for you.

Julidoherty

Hi all..
I had the Decapeptyl injection on Mar 29th... Was told to expect menopausal side affects... had not one! So I guess it affects different people in different ways. @Danniboo Hope you have the same reaction to whatever injection you are getting!
Had an abdominal myomectomy to remove fibroids on 17th June So sore now... How do ladies have babies by sections and come home with them and do stuff!!! I am sooooreee!! @JillyQ why so many myo's??

JillyQ

Julidoherty wrote: »

Hi all..
I had the Decapeptyl injection on Mar 29th... Was told to expect menopausal side affects... had not one! So I guess it affects different people in different ways. @Danniboo Hope you have the same reaction to whatever injection you are getting!
Had an abdominal myomectomy to remove fibroids on 17th June So sore now... How do ladies have babies by sections and come home with them and do stuff!!! I am sooooreee!! @JillyQ why so many myo's??

Fibroids can reoccur the other choice is a hysterectomy which i am not ready for yet. Glad to here the med are working well for you.

elly123

Julidoherty wrote: »

Hi all..
I had the Decapeptyl injection on Mar 29th... Was told to expect menopausal side affects... had not one! So I guess it affects different people in different ways. @Danniboo Hope you have the same reaction to whatever injection you are getting!
Had an abdominal myomectomy to remove fibroids on 17th June So sore now... How do ladies have babies by sections and come home with them and do stuff!!! I am sooooreee!! @JillyQ why so many myo's??

My baby was born 3mths ago by section after going the whole hog of pushin Sections are sore but your on cloud 9 with the little person and the adrenalin helps ease the pain :-) I think I suffered more with endometriosis that when it came to the labour and section I could handle pain to a certain degree. I found contractions very similar to the pain I suffered with endo.

Hope your feeling better soon, lots of rest and TLC xx

mrsphisto

Was wondering has anyone used the mirena coil as a treatment for endometriosis, i'm going for my 3rd lap next wk and my consultant wants to insert the mirena coil during it. I'm a bit concerned and very undecided as the majority of what i've read on the mirena coil has been negative.

I'm hoping someone can share their experiences with me as i'm so lost at the minute and after years of in and out of the a&e i feel this could be my only chance at living a normal life. I'm aware all treatments effect people differently but i've no one to talk to about this and would be very greatful to anyone that could help

Hi,

I've had the mirena coil in nearly 2 months now and to be honest if i knew now what pain I should feel than I would never have done it. Maybe it's me but I have dealt with endometriosis for years I have the last stage (yes it means I have scarred everything and one ovary is stuck to the bowel) I am at the end of dealing with this. I have been suffering with endo for over 25 years I turn 38 in sept. I' lucky i have someone that understands but it's not easy.
Right when the Mirena was suggested by a gyno I thought at last someone who understands, I don't want kids (this was the only soln offered to me after my last lap and fertility (can't wait to take your money type doctors) suggested I should have kids cause that is the soln to everything. Sorry Rant over...here's what happened.
I had the coil inserted (and i remind you that you ask every question possible), does it hurt, how bad does it compare to the lap, I was told in front of my husband that the side effects were minimal, and my periods would stop. I asked how long after should i rest and i was told that I would be fine after a few days rest. I have the op on a Fri and was meant to be back in work on the Mon. This did happen however I left work in pain and have felt pain since. It hasn't stopped nor has the bleeding it's been 8 weeks. I don't know how to describe the pain, i went back to my gyno after pleading with them on phone that this wasn't normal. she agreed and did nothing apart from giving me an extra dosage of progesterone. The reason I post this is because I'm angry I'm upset and in constant pain, I have learned over the years to deal with endo but this i have no control over. My body is swollen and the pain has caused me to vomit, and my whole body swells, i actually look pregnant. I want my body and health back.
I'm sorry for the rant and bad spelling but i'm just back from Holiday and spent most of it in bed in pain. I'm still going to keep the coil until answers have been gotten and that this pain i feel will subsides...i keep hoping that it works and that after a another month i will feel better. I want alternatives I want a life so i still have hope...plus this is my 3rd gyno and i will keep getting 4th 5th etc opinions until someone can help. If you have the coil in then please take a week off and do not stay on your feet or lift heavy things too much. I work on my feet for most of the day and this does not help. Also if you go through with this please have an anaesthetic. Take difeine it will help.. to be honest tramadol was the only thing that gave me some relief. Don't take too much just what is prescribed.

Ms. Koi

If you are in that much pain and you aren't happy you need to go back and ask for it to be removed. It sounds like an awful lot worse than I've heard. Hope you feel better soon!

spurious

That doesn't sound normal to me.
Why don't you get it removed if it is that bad?

bubbaloo

Mrsphisto - I have the coil in since April. I have severe endo and have suffered for many years. I have been pregnant 4 times (including 3 losses and one miracle little boy) but pregnancy was in no way a solution! Once the pregnancy was over the endo crept up again and I was back in for another bout of surgery.

My GP inserted the coil in early April and told me that the first 3 months would be horrific in terms of irregular bleeding and she said I might have cramping for a few days. I bled for 20 days out of 28, for the first 3 months. I had pain too , however it was nothing compared to what you describe.
I am waiting for my fifth period since getting the coil in and I have to say that last cycle and this cycle I have had no irregular bleeding.
The pain subsided after the first month. I don't recall having any swelling.
At this stage for you, I wouldn't be worried about the bleeding but the pain is not normal. If it is causing you to vomit you should consider having the coil removed. I know someone else with endo and she had the coil for a year with bleeding and pain before she had it removed. Sometimes it doesn't serve it's purpose and it makes the woman feel worse.
Please talk to your GP and see what can be done - don't carry on in hope if it's obvious now that it does not suit you.
Us endo sufferers have been through enough (even just trying to get a diagnosis) - why suffer on?
Good luck.

Danniboo

Guys,

Considering going for a second opinion, seeking alternative treatment, can anyone recommend a consultant? I've decided there's no way i'm going down the road of injections that will cause the symptoms mentioned. I try to eat healthy and manage my weight, and this will most likely make me gain weight. The hormones can cause excess facial hair and i've spent a fortune on laser treatment, managed to get it reduced, not to mention mood swings, hot flushes etc. I just can't believe that this is something offered as a treatment in this day and age, it's a bit cave man if you ask me. I've just started the ponstan the last couple of days and the pain relief is great so far.

JillyQ

Danniboo wrote: »

Guys,

Considering going for a second opinion, seeking alternative treatment, can anyone recommend a consultant? I've decided there's no way i'm going down the road of injections that will cause the symptoms mentioned. I try to eat healthy and manage my weight, and this will most likely make me gain weight. The hormones can cause excess facial hair and i've spent a fortune on laser treatment, managed to get it reduced, not to mention mood swings, hot flushes etc. I just can't believe that this is something offered as a treatment in this day and age, it's a bit cave man if you ask me. I've just started the ponstan the last couple of days and the pain relief is great so far.

what part of the country are you in?

Danniboo

JillyQ wrote: »

what part of the country are you in?

Dublin, there's a good chinese doctor in Malahide. I'm going to go and see him and if I don't get anywhere will consider another gynaecologist.

JillyQ

Danniboo wrote: »

Dublin, there's a good chinese doctor in Malahide. I'm going to go and see him and if I don't get anywhere will consider another gynaecologist.

PM Sent

Lainey89

Hi Ladies.

I got into James' to see one of Dr. Hugh O' Connors team about 3 weeks ago. I say a young enough female Dr who told me some things that conflicted with information I had gotten from a previous gyny or read in medical journals. Mainly that endo was in no way hereditary.

I stopped taking the Pill about 3 months ago and to my surprise a lot of the pain I had been having has disappeared or is greatly lessened, and in general I feel much better in myself. As I result I told her I didn't want to go on anything hormonal and really just wanted a pain management routine. She insisted I should be taking something hormonal and went to speak with another gyny and came back with a prescription for oral Provera.(3 by 10mg dose a day for 90 days). Does anyone have any experience with taking this?

Danniboo

Lainey89 wrote: »

Hi Ladies.

I got into James' to see one of Dr. Hugh O' Connors team about 3 weeks ago. I say a young enough female Dr who told me some things that conflicted with information I had gotten from a previous gyny or read in medical journals. Mainly that endo was in no way hereditary.

I stopped taking the Pill about 3 months ago and to my surprise a lot of the pain I had been having has disappeared or is greatly lessened, and in general I feel much better in myself. As I result I told her I didn't want to go on anything hormonal and really just wanted a pain management routine. She insisted I should be taking something hormonal and went to speak with another gyny and came back with a prescription for oral Provera.(3 by 10mg dose a day for 90 days). Does anyone have any experience with taking this?

I'm totally with you in the no more hormones approach. Excess estrogen can apparentely cause or worsen endo, which might explain why you felt worse on the pill?

Lainey89

I suspect so Danniboo. I had terrible pain from what I suspect was my gallbladder on the Pill and that has completely gone since I stopped the Pill. I do now get ovulation pain tho but I can live with that.

The Provera is a progesterone only tablet so maybe it will re-balance everything. I'm still undecided if I will take it tho.

Ms. Koi

I'm sticking to a strict diet to try eliminate some of my symptoms. It does help a good bit. I'm veggie so I have no problem avoiding red meat, but I avoid soya as they both increase oestrogen production. I eat little to no white flour, all whole grain everything, including rice. I make a smoothie each morning with frozen berries, frozen spinach, celery, avocado, banana, milled linseed, honey and fruit juice. Does me wonders!

Any one here been through a hysterecomy for Fibroids

Its been recomended for me, and while Im considering it, Im scared.
HAd hoped things would have improved for me by having the Mirena coil removed, but no, things as bad as ever. So for that reason I am considering the surgery, but only because Im sick of pain and bleeding constantly.
Was wondering, for anyone else whos been through it, was it worth it?

thanks a million in advance

JillyQ

Jake1 wrote: »

Any one here been through a hysterecomy for Fibroids

Its been recomended for me, and while Im considering it, Im scared.
HAd hoped things would have improved for me by having the Mirena coil removed, but no, things as bad as ever. So for that reason I am considering the surgery, but only because Im sick of pain and bleeding constantly.
Was wondering, for anyone else whos been through it, was it worth it?

thanks a million in advance

Hi i have had 4 surgerys fibroids were removed in all of them. Take my advice get second opinion, i got a second third and fourth, 1st gynie that i went to was fab but has retired 2nd one tried to push me in to a hysterecomy, i didnt want it, 3rd one in Dublin said i didnt need it and gave me the name of another gynie in Galway who agreed with him and did another myomectomy (spelt it wrong) i will have to have a fifth one done in the next year or so. All im saying is dont get pushed into it if you dont want to.

Cheers Jilly. No I wont be making any decisions until Ive weighed up all the facts. Just at this point in time, Im not sure which side Im on.

Will I, will I not, ..will I ?
Thankfully I have a few weeks to make up my mind for sure.

Thanks for your reply.

JillyQ

Jake1 wrote: »

Cheers Jilly. No I wont be making any decisions until Ive weighed up all the facts. Just at this point in time, Im not sure which side Im on.

Will I, will I not, ..will I ?
Thankfully I have a few weeks to make up my mind for sure.

Thanks for your reply.

Good Im glad to hear that. Fibroids are a rotten old thing to have. But with a combination of the right Dr, treatment etc they are managable.

spurious

Jake1 wrote: »

Any one here been through a hysterecomy for Fibroids

Its been recomended for me, and while Im considering it, Im scared.
HAd hoped things would have improved for me by having the Mirena coil removed, but no, things as bad as ever. So for that reason I am considering the surgery, but only because Im sick of pain and bleeding constantly.
Was wondering, for anyone else whos been through it, was it worth it?

thanks a million in advance

I'm going for uterine arterial embolisation (hopefully by the end of August) as I wouldn't be a good candidate for hysterectomy. Is there a reason your doc is going straight for a hysterectomy without trying other things?

spurious

spurious wrote: »

I'm going for uterine arterial embolisation (hopefully by the end of August) as I wouldn't be a good candidate for hysterectomy. Is there a reason your doc is going straight for a hysterectomy without trying other things?

Not sure, but I think the main reasons were,

1: i wont be having any more children,
2, ive just had Mirena coil taken out
3: Very heavy bleeding constantly.

Ive to go back in a few weeks, we'll talk more then I suppose.
Im just trying to check around myself, and see what the options are and or what the after effects of a hysterectomy would be like,

Im going to look into that embolisation too.

Surgery is the last thing I want.

spurious

I'll PM you to let you know what my experience of it is, whenever it happens.

spurious

spurious wrote: »

I'll PM you to let you know what my experience of it is, whenever it happens.

Cheers for that, the very best of luck with it !!

Danniboo

Hey guys,

If I go private in Tallaght would you know if it would make a huge difference in the level of care I get. Mainly would I get to see my consultant each time rather than seeing different doctors every time. Otherwise where would someone recommend if I go private, for a second opinion? Back up next month and i'm not going on those injections, period.

Danniboo

Anyone ever heard of this?

"Endometriosis Bible & Violet Protocol"