Should I have a hysterectomy for my endo?

Women's health
1

Hi, I'm 34 from County Durham, UK and I've suffered with endometriosis for 7 + years and after many laparoscopic surgeries using lasers to remove endo and adhesions and to free my left ovary which repeatedly adheres to the base of my vaginal wall. I'm at the stage where they are offering me a hysterectomy. My pain is horrendous, it affects my right leg down to my foot as I have growths in my ligaments and around my nerve sac. I have constant pain in my lower right side of my pelvis and through my back, bowel movements are agony and I have trouble peeing often as I have endo right round my bladder, bowel, literally everywhere. I get huge bloated painful episodes and vile cramps, sex is very painful. The consultant lasered some nerves to deaden the sensation but all he achieved was permanent numbness around my outer thighs and pins and needles. 

I have been on tramadol, codeine, provera and even the anti epilepsy drug gabapentin to control pain and I still can't live with it. I had to quit my job years ago and with arbitrary cuts to benefits were struggling to survive because of my health. It has affected everything. 

My fear is that I will get the hysterectomy and the pain will either remain or come back later, he's leaving an ovary which will continue to produce oestrogen and keep the endometriosis going. I'm scared at the implications and risks of having a hysterectomy when there are no guarantees I will be pain free. 

Im struggling to know what to do. The endometriosis is widespread and severe as is the pain and I feel like my consultant is doing this because there is nothing else to do rather than him believing it will actually help me.

any advice?

Holly ❤️ 

2

My heart goes out to you.

I wish there were an absolute way to leave you pain free and completely functional, but I would be lying if I said there were. Part of the reason there is nothing surefire for you is because you've had so many surgeries already and have so many adhesions, but also because there is nothing surefire for any of us with endo.

You don't mention which kind of consultant lasered the nerves. Whatever he was, I wouldn't let him near me again. Maybe he truly knew what he was doing, but it doesn't sound like it. I hope it wasn't a neurosurgeon who did that as they're the only ones I'd allow to touch those nerves.

Does the gabapentin help with the neurological mess left by lasering? I don't know if it can help in your situation. With my problems we sometimes have to increase the dose, sometimes just one extra on 2 of the 3 daily regimens and sometimes permanently for all 3 regimens. One must be on it for quite a while and must (I believe) be taking it 3 times daily. I can't imagine it helping generally with endo pain. If it was helping when mine came back on my colon at 54, I sure couldn't have made it 4 months waiting for surgery without the gabapentin.

None of us here are doctors but we have experienced this disease in a way few of them have. They always want to leave one ovary when they do hysterectomies. This guarantees that you'll be having another surgery in a few years just to remove that. Meanwhile maybe it's still functional and maybe it's not. Your doc doesn't know for sure.

If I were you I'd have the hysterectomy, insisting that the doc agrees -- and puts it in writing ahead of time -- to remove both ovaries and cervix, tubes, and uterus plus as much adhesions as can be safely done. If you can go somewhere to get to an endo specialist for this even better.

Starting now & continuing after the surgery I'd switch to a diet designed to reduce inflammation throughout the body and I'd give acupuncture a try. Adhesions may be a lifelong issue for you. I hope not, but I'd try the diet anyway. I think I'd try to get by without HRT because of your age. First I'd check on current research on one specific question: can endo manufacture the hormones it needs for survival in the absence of both HRT and ovaries.

That was a theory 8 years ago when my endo came back (presenting itself as if it were diverticulitis). I haven't followed that because it's too depressing a theory. But if it can manufacture it's own food then there's no reason to avoid HRT on that score so I would then consider it.

Long story short I believe you will still have pain but I'd do the hysterectomy because at least that way the most afflicted organs & their pain would be gone. If you wanted (more) children, start working with someone now to process the grief & sorrow. Acupuncture might help with the neurological mess over time and it might help post-surgery in relieving the pain patterns which are long-set in your abdomen. No guarantees on anything except that it will not get better on its own.

You're in my prayers.

3

Hi

thank you very much for your reply. What an awful condition this is to live with! My prayers are also with you because I understand how painful and draining it is. I'm so sorry for the pain you must have suffered when it attacked your colon, bowel pain is atrocious. 

I was on the Gabapentin for 3 months and although it lessened the pain (my GP put me on it because I'm tolerant of opiates having been treated with them for so long and can't take NSAIDs and he told me it changes the way the brain interprets pain signals) however it made me sleep for literally 18 hours a day and because of my daughter and animals this was too much. I couldn't function enough to do anything and I bloated massively and was confused and forgetful. 

The surgeon who decided to laser my nerves is my gynaecologist and in the UK you get who you're given unless you can afford to pay for private healthcare. 

I have started the diet and exercise daily when I'm not in too much pain and that's the best thing for me. I've found various supplements like MSM to try and my mum is getting me a TENS machine. 

I will look into the research you mentioned, If it really can feed itself then I think I just have to learn to live with pain somehow. I am lucky I had my daughter when I was young because otherwise I'd not have been able to have a child. My husband and I tried for years after my daughter was born to no avail. I have dealt with that and thank god for my girl. I only hope she never has to suffer this. 

The gynaecologist said I have a lot of adhesions and scar tissue which is why the hysterectomy is my only option now. I think I'm just scared. I know I have limited options but somehow I am scared of going through it to come out with the same levels of pain but with the additional complexity of menopause. There are no easy choices but you've certainly made it clear that it won't get better alone and I need to stop worrying have the op and hope for the best 

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I'm so glad you've got your husband & daughter!

If you're stuck with the same gynae, ask around to anyone not connected with that doc to see if you can have a neurosurgeon standing by just in case any nerves need to be dealt with. Just because no one does that doesn't mean it cannot be done though your NHS may have a rule.

I understand about the gabapentin. It does bloat one and cause confusion in many at the start. I didn't have the sleep problem. We do have to be able to function, especially when we have kids.

How old is your daughter & what kind of animals do you have? I have only a dog now, living in town. I grew up in the country in Texas and we had all sorts of animals even tho my father had left behind his rancher and farmer days for less rigorous pursuits. I wouldn't trade that childhood for anything.

I'm in my 60s, had a total hysterectomy at 27 in '81. I continued to have some pain for a while after tho not the cramping. It didn't last forever but seemed more like pain because pieces were missing. That's especially where I think acupuncture might help. Despite smoking a pack a day, I did conjugated estrogens right up until the endo came back when I was 54. No one thought such a thing possible back in the 1970s -'80s. I had tapered down to the lowest dose sold in the States in my '50s and stopped that as soon as I saw the pathologist's report saying endo, not diverticulitis, cost me that chunk of my colon. I've been pretty pain- and symptom-free since then, for which I am grateful. Good thing as I have other health issues to tend to, lol.

Take care & keep us posted.