Is a hysterectomy inevitable?

[Chicken1001]

I had my follow up consultation yesterday following extensive surgery (endo removed throughout the abdomen 'everywhere', a 10cm endometrioma, appendix, scar tissue, both tubes).

Only diagnosed at 35 due to infertility investigations. Stage IV. I guess I was 'lucky; in that I didn't realize before and I could manage the pain.

The consultant essentially said after we finish fertility treatment (at this stage we have had 7 failed ivf cycles and honestly my mind is a mess about what we should do) he would recommend a hysterectomy.

I didn't expect this, and actually didn't think it was the go to solution any more. I've started visanne (progesterone) and apparently I have to stay on this forever or one of the gnrh analogues alternatives. The combined pill wouldn't be suitable apparently due to the estrogen content.

Honestly I am feeling a bit crushed, the recovery from the surgery has been slow, and I still feel far from normal. TBH parts of my abdomen now feel worse than pre-surgery. On top of that I have clearly made the endometriosis much much worse myself by doing so many ivf cycles

I appreciate that I was v.lucky that I got surgery so quickly/ there was no cancer/ that I haven't been in agony for years.

But is this it - swallowing hormones for the forceable future and a hysterectomy in a few years. I feel so helpless -has anyone found anything that works, diet, exercise, yoga, counselling, acupuncture. All the medical evidence is so deflating - i.e. nothing officially works

[AllthatGlitters]

Hello I know how you feel as a hysterectomy is my only option now. I have had 1 lap and 2 ablations which never worked. It’s taken me a couple of years to get my head around the fact that I may need a hysterectomy as told at the start of my surgeries that if they didn’t work then there was nothing else they could do apart from this big operation. I say you need time to get your head around it. It comes as a shock. You need to process it. You have to think about you and your future, you want to be pain free as endo and adeno are so hard to live with (hysterectomy takes away the adenomyosis but can still leave endometriosis). Here if you need a chat x

[Chicken1001 in reply to AllthatGlitters]

Thank-you for your reply. Yes there is a lot of head wrapping involved with this horrible disease. I miss the good old days when I considered a cold a health disaster Doctors are so blase about chopping out body parts too...

[Lindle]

Hysterectomy won't do anything for severe endo as it will reman and continue to grow. Is this a tertiary endo centre that has said this?

[Chicken1001 in reply to Lindle]

So it's complicated but I moved out to Switzerland for a year this March. 6 weeks after arrival the 10cm cyst made itself known to me (total nightmare, just what you need in a foreign country when you don't speak the language yet

I found an specialist endometriosis centre in the local university hospital and managed to get referred there. So it's hard to compare to the UK system. They seem pretty good, were totally horrified that the UK system hadn't picked it up / removed it and that I wasn't on any hormone treatment. The surgery was meant to take 3 hours, in the end they took 7 hours, so I think they were thorough.

It's just this hysterectomy comment that has thrown me. Unless he meant removing uterus and ovaries. But then I still have residual endo on the bowel. Surely I would need hormone replacement therapy after hysterectomy and that would keep the endo active in any case. I'm still processing 7 failed ivf cycles and my tubes being removed. I'm not ready to lose more body parts yet...

[Username12345678]

Hi there, I am so sorry that you are suffering. I cannot imagine the strength you need to complete so many cycles of IVF. My story has some similarities as I was found to have widespread stage 3-4 endo after suspected appendicitis. The original appendix surgery should have been 45 mins but was over 3 hours due to my organs being fused. Since then I had a course of Prostap for a couple of years which I found really helpful but I do not want children so that is probably not for you. Recently I have found that yoga makes a big difference. I am a beginner and fairly fit as I walk a lot but I have found it seems to give me a better connection to my body. Mentally it also helps. Being able to ‘zone out’ of what is going on in day to day life even for just a few moments is very helpful. I too am facing the option of hysterectomy and I change my mind almost daily but too take comfort in the knowledge that most people I have spoken to (around 80%) state it’s the best decision they ever made. I wish you all the best.

[Chicken1001 in reply to Username12345678]

Thank-you, that's really good to know about the yoga. I had started in the weeks before the operation but my energy levels were so low it was really hard. I will go back to it now! I wish you all the best too with whatever you decide. I'm so pleased and relieved to have found this forum

[Ronsk]

I'm really sorry to hear this, however I can empathise with you having been through very similar myself. I myself went through 5 icsi attempts however it was only after the 2nd attempt they found endo . I had had laps prior to treatment and there were no signs of endo then so I kinda blame the hormones I was taking. I also have pcos. I've been on pain killers for a very long time to manage the symptoms and have been through two years worth of medicated menopause on and off over the years, my struggle is I could have the hysterectomy or deal with the pain but its a bit of a dilemma either dealing with symptoms of menopause or the pain with endo. Part of me thinks ill just go with the painkillers. I've resigned myself to the fact ill never have children. However im in a new relationship and my consultant says my chances are improved now . I tried changing my diet etc and it did not work. The problem is not getting pregnant with ivf for me, its staying pregnant. I also had counselling which I felt was useless because no amount of talking therapy can change how I feel about the situation or help me deal with it in a better way. I've had counselling in the past for other things and it really helped me , I just feel its not really for me in this situation and it hurts soo bad to talk about with a stranger and in general. Its easier to talk to someone who is going through the same thing and not feel soo alone because nobody else truelly understands how it feels . Take care x

[Chicken1001 in reply to Ronsk]

Thank-you so much. That's interesting that you may have experienced endometriosis exacerbation too. I do feel that medics should be much more mindful of the hormones and drugs they ram into women's bodies during fertility treatment. No one ever mentioned that the ivf could dramatically worsen endometriosis. My tubes went from patent to utterly destroyed over 3 years. The only difference in my life was the ivf ;(

I know what you mean about people (even counsellors) not getting it. My friends do try but I know most of them cannot comprehend the horror and trauma of the situation. The fact that so many women live with this is utterly insane.

The thing that also worries me is lack of control, I would rather take painkillers too rather than have a depot injection 'controlling' me. But I guess we ourselves change with time and we are all different. Its just working out what the best path for ourselves at each point is. It's so helpful to hear other people's experiences though to try and be more informed. I'm so grateful it's not the 1980s and I'm not sorely reliant on a doctor's say so! Take care too!

[Esmeralda_g_f in reply to Chicken1001]

I have met women who had ivf in the 1980s. Most are dead. Those who survived have had cancers. I know one who is divorced. Her daughter is a nurse also divorced and her son is still married to my friend but doesnt speak to her, because of her 'erratic behavior'... So many consequences for the 'gift' of giving birth

[EmB18]

Hi, sorry to hear you are having a tough time. I think it's worth trying to throw lots of different things at this disease to see if you can find a combination that works for you. We are all different but I found making changes to my diet made a big difference to my symptoms. For me taking out wheat, sugar, caffeine and processed foods helped along with adding in more anti-inflammatory foods like fruit and veg. I also find yoga and homeopathy helps and I know some people find acupuncture helps with pain. Good luck.

[Chicken1001 in reply to EmB18]

That's super helpful, thank-you. It makes me more hopeful to try making changes