What are my options?

Hi everyone, I'm new here but have a question. Background is a bit long, so bear with me!

I have 5 kids, luckily never had any problems getting pregnant. I've always had heavy periods, to the extent that when I'm not on a hormone contraceptive I have to change a Tampax every 2-3 hours during the first few days of my period, which lasts 7-8 days. I'm currently on Depo-Provera and don't have any periods at all.

My first 2 children were born naturally, but my younger 3 were all Caesarean section (premature, but waters had broken and had various complications which meant caesarean was necessary). I also have IBS (Irritable Bowel Syndrome), and thanks to the spinal anaesthetic with my first caesarean I have Chronic Back Pain too.

I first suffered severe lower abdominal pain 2 1/2 years ago. Was admitted to hospital via a&e, stayed for a week, was discharged with no answers and still in pain. The Dr I was under while I was there was convinced it was bowel related, despite me saying it didn't feel like my bowels and that I thought it was gynae. In Sept 2010 he put me through a colonoscopy which had me screaming in pain the entire way through despite painkillers and sedatives, and left me with PTSD (Post Traumatic Stress Disorder), and found nothing as I had predicted. He then referred me to gynae, which I had been begging for him to do since I was in hospital for the week stay.

In Nov 2010 I had a laparoscopy which showed endometriosis and adhesions (from the caesareans). They removed what they could of both the endo and scarring, but told me that the front wall of my bladder had been stuck to my abdomen, the front of my uterus was stuck to the back of my bladder, and my bowel was stuck to the back of my uterus!

I was entirely pain free for a year, then slowly the pain would come back a little bit when my period would be due (am on Depo injection so don't have periods). It has slowly been getting worse over the last year and I'm up to the point where I am in constant pain, have a dragging pain sensation when I go to the toilet (wee and poo), am in a lot of pain when I have sex, and when my period would be due I'm doubled up in agony. All this despite already taking paracetamol, ibuprofen, and tramadol several times a day every day for my back pain, so I dread to think how bad my stomach would be if I wasn't already on the painkillers!

I've been to my GP who has referred me to gynae as she thinks it is pretty definitive that the endo has come back. She said it would be 2-4 weeks before I hear from them offering me a consultation appt, it's been 3 weeks and 3 days already and nothing so far. But I've also asked if I can have a hysterectomy. I'm only 28, but I can't keep repeating this pain cycle every 2 years or so (aside from not wanting to be in pain, it impacts on my kids if I'm in and out of hospital etc) and I've had all my kids and am absolutely certain I do not want any more.

Does anyone know how likely they are to do a hysterectomy? I know there's no guarantee that it will stay gone after a hysterectomy, but I need to do something and seems to me like the best option having already tried some other treatments (painkillers, hormones stopping periods, laparoscopy removing the endo etc). I've done a lot of reading up on the whole thing (endo and hysterectomy) so I know what's involved with both.

Thanks

[InsideOut]

Congrats on having 5 children!

I'm not sure what they will say about the hysterectomy but the thing that occurs to me is that you are very young and if you do it now I think you will have to spend a very long time on HRT as they will have to remove your ovaries as well. I know in many cases a hysterectomy is unavoidable but when my consultant first discussed options with me a few years ago he was keen to avoid it because of the HRT issue - I was about 40 then. I've just had another lap but as I am now closer to 50 (boo!) I think if things get any worse in the next couple of years I will now go for the full op as I should be closer to menopause.

Ask lots of questions. x

[littlestar]

hi i am 35 and have had endo as long as i can remember,i was diagnozed in 2005,i have had 2 laps and a cystocoscy,had endo removed twice during laps.Next week i go for a hysterectomy and they wouldn,t do it til i was 35 and followed the path of contraceptive pills til i became immune to them,laps repeatedly,mirena and 7month of deceptyl.The only thing is that i have no children but am also unable to conceive too.I was told the reason was that despite this they weren,t willing to do it under 35 as its the age when fertility drops anyway,also you are only allowed 10years of hrt and despite all this if my ovaries are viable they still plan to leave them in and just clean me up and separate everything,i have lots of adhesions,bladder,bowel problems and was bedbound in april til the deceptyl kicked in.

[missteal]

Hi hun,

So sorry you've had to go through all this. I picked up on the fact that all 3 of you more recent pregnancies ended with premature rupture of the womb and c-section. Have you ever heard of adenomyosis? This is a symptom of this and I wne tinto and out of labour for 5 weeks before my son was eventually born late (typical man lol). When you see the gynea, ask them about possibly adeno as it sounds to me like you might have it.

I'm really sorry to tell you but a hysterectomy won't work and they won't let you have one anyway because of your age (I'm also 28). I have been put on norethisterone, a really high dose of progesterone and it's helped my symptoms so much. Might be worth asking if you can try it.

Good luck xx

[ginger83]

Hi, I'm only 29 burnt will be having a hysterectomy sometime in the new year. I have suffered from endometriosis for more than 10 years. I have tried lots of different pills, the plant, depo and mirena coil yet nothing stopped periods or pains. I have had decapeptyl injections for the past 5 months and they are the only thing that have worked. I have 2 children and don't want any more. The first consultant said they wouldn't do the op as I'm too young but her boss has said I can have it done. x

[Hidden]

Thanks everyone.

Mixed messages, so I guess it just depends on who I see.

Something I didn't mention which only occurred to me after I posted (from reading another thread on here) was that I've had a lot of anal bleeding which, from the symptoms of the other lady, could be explained by endo. Should I mention this to my GP, or wait til I see the gynae, or both?

Ok, some background on my kids. My first was born at 39 weeks, no problems, natural birth. Second born at 35 weeks, waters had broken and the baby ended up with group b strep, natural birth. 3rd I fell pregnant on the mini-pill, she was born at 28 weeks after waters broke and we both got group b strep, emergency c-section. 4th was a mirena coil baby, fell pregnant with coil in place but him growing pushed it out, and he was born at 30 weeks as my waters broke and my 18 month old c-section scar threatened to rupture, emergency c-section. 5th I fell pregnant on the combined pill, she was born at 27 weeks by emergency c-section as they didn't want to risk any problems happening considering what had happened with the previous 2.

I split from my husband nearly 2 years ago and although I'm not currently seeing anyone I want to be prepared, and the Depo injection is the only form of contraception that I haven't had problems with or fallen pregnant on!! Would I be able to keep using that if they do say no to hysterectomy and give me other drugs etc to try and control the pain?

Also, is it worth stressing to them that I can't keep having laps to reduce the endo every 2 years or so cos of the impact it will have on my kids (if they say no to hysterectomy that is)?

Is it ok if I start another thread for what questions to ask? Think I'm gonna need help compiling a list!

[missteal]

hi again,

I don't think I made my point clear in my last reply. A hysterectomy is something some dr's will do, however this will probably not help with most of your pain as you said you have endo and adhesion's on your bladder and bowel too.

Having a hysterectomy is one of the hardest decisions any woman would have to make and I'm sorry you're having to think about it. There are lots of ladies on here who have had a hysterectomy that still have bad problems with endo so having this op might not automatically mean that you have no more ops. The hospital I go to won't even take out one of my ovaries because of my age and my body needs the hormones to protect against things like osteoporosis and breast cancer.

There's a lot to think about, I know. I'm sure you'll come to the best decision for you and your family, good luck x

[Hidden]

Thanks hun (and everyone), I really appreciate the advice.

Honestly I have given it a lot of thought. I know all the pros and cons of endo, and of hysterectomy, and of a lot of the "usual" treatments for endo. I know hysterectomy isn't guaranteed to get rid of it for good, and that leaving ovaries in place (which they most likely would considering my age, I'm 28) means more likelihood of the endo coming back. But also considering my history, and my mums history (I've put both, plus my symptoms, on another thread endometriosis-uk.healthunlo..., I'm kind of hoping that the gynae I see will be nice and take everything in board and accept my request.

I've already been on mini-pill, combined pill, and mirena coil (fell pregnant on all 3!) and they did nothing for lessening pain, although mirena stopped the periods. I've tried contraceptive implant which did stop my periods but didn't lessen the pain but it made me put on 2st in 6 months so I'm not going there again. I'm currently on Depo-Provera which had stopped my periods but I'm still in pain. I take mebeverine and buscopan for IBS, but trigger foods still set off diarrhoea. I take paracetamol, ibuprofen, and tramadol for chronic back pain, which is worse during periods (or when period would be due). And I've had a laparoscopy with removal of adhesions and endo 2 years ago, no follow ups or follow up medications, and it has come back.

Waiting for letter from gynae for consultation appt. Saw GP over 3 weeks ago, she said I would hear from them 2-4 weeks after seeing her, so hopefully should hear soon

[Hidden]

Should add that despite all the medications I'm on I'm still in constant pain from endo which is worse at certain times (periods, sex, going to toilet etc) and tramadol is a very strong painkiller, so I dread to think how much pain I would be in if I wasn't taking so many painkillers!!