is a hysterectomy the answer?

[Tootie2008]

I went to a private consultant last year who said I have endometriosis, she did an internal ultrasound and then listened to my symptoms to make her diagnosis. I have been on tibolone and prostap injections the past 8 months, and still having a lot of pelvis pain and bowel and bladder issues, so she says I need a hysterectomy at the end of the year, I’m only 34. I have asked quite a few times that she does a laprascopy but she says no cause she says there’s no point when I’m going to have everything removed but I thought that they need to know how bad scarring is before they go in blind and I keep getting ignored about rib pain I have so I think it’s on my diaphragm. I’m in Northern Ireland so it’s really hard to get any specialist for endometriosis and I’ve tried to get to a provisional endometriosis Center that we have but when me and my go have tried nobody seems to even know it exists!! So frustrating, I’ve paid so much money to different doctors and this consultant is very accomplished but she isn’t an endometriosis specialist at the end of the day. I have read so many times a hysterectomy won’t solve endo so I don’t want to go through a major operation for nothing. Also I’ve had two kids and don’t want anymore so that’s why they think this is a logical option and not to do laprascopy cause it will just cause more scarring, what should I do??

[Goiaba]

I’m so sorry you are feeling dismissed and not heard. Seems to be a very common feeling for us all.

I have also read exhaustively that a hysterectomy is not a definite solution, after all there is no cure for endo.

My mum, her cousin and my auntie also have endo and suffered from symptoms for the majority of their lives. They had a hysterectomy around their 40s and never had any symptoms since.

I’m now 30, have had 2 laps and it just keeps coming back. My new consultant suggested hysterectomy and I accepted it because I prefer to see this as one more attempt to at least slow my endo down, not necessarily get rid of it. I never wanted kids so no issues there. I also have adenomyosis - that’s not why the hysterectomy was offered but at least this will be cured and hopefully help with some symptoms!

I’ve been on Prostap and tibolone as well for the last 9 months and surprisingly it did help with some of my symptoms, like the daily pelvic and leg pain.

I know this is probably not the answer you’d like to hear as there is no guarantee that the hysterectomy will get rid of everything, but I’ve had close examples where it worked and I decided to try it too. I hope you can make an informed decision and be at peace 💛

[Tootie2008 in reply to Goiaba]

thank you for replying, do you have any issues with your diaphragm like rib pain? I’m worried I’d get the whole hysterectomy but that endo might be on my ribs (I have bad rib pain this last three years, had gallbladder out seven years ago and think endo may have formed near the scar tissue)

[Goiaba in reply to Tootie2008]

I don’t have any rib symptom I’m afraid. Does your pain coincide with your periods or gets worse then? I’d push for an MRI at least.

It sucks that sometimes we feel like we know more about this condition than the people who are supposed to treat us but at the end of the day we know our bodies like no one else, so if you suspect you have diaphragm endo advocate for yourself, push as much as you can, be overly dramatic about it. Say you can’t breathe if needs be.

I once asked my consultant that once I had my lap I was concerned there was no preventive tests or anything to avoid getting to the stage where I’m in excruciating pain and losing my organs to endo and they very calmly advised me to lie. If your pain is a 4, say it’s an 8. If you can force yourself to live yours days despite the pain, tell them you’re dying and can’t leave the bed. Unfortunately I found this is the only way we are heard, especially when GPS and general gynaes like to say ‘it’s not that bad’.

[Tootie2008 in reply to Goiaba]

yea I’m totally exhausted with having to do so much research and having to make decisions that clearly a medical professional should be making or advising me on, I’m so used to being not listened to or gaslit. My rib pain was bad round my periods then it got horrific all the time, I went to pain specialists, had steroid injections, went to a thoracic surgeon, none could figure it out, it’s now nearly disappeared since being on my prostap injections so I think it is endo adhesions, I’m so scared if it travels up my chest and my lungs

[Goiaba in reply to Tootie2008]

I does make sense, very consistent with endo. The good news though is that the Prostap can slow things down and shrink new lesions - that happened to me and it saved my kidney while waiting for the surgery!

I hope you get heard and sorted soon lovely 💛💛💛

[Bubblepoppy]

I had a hysterectomy last year and they took everything but my overies because it's the overies that feed the endo it didn't work for me I'm hopeful it might work when they take out my overies they say they don't like to take the overies when your too young because I was 39 at the time of the op now I'm over 40 they will let's hope they take yours all out at the same time, I was initially told before the hysterectomy I was having my overies out and they didn't take them now I need yet more surgery it's ridiculous, good luck with your op I hope it works for you xx

[Tootie2008 in reply to Bubblepoppy]

yea they said they are going to talk everything out for me, I’m worried about the health implications of having it so young and also how it can affect your mental health with the hormone changes, I’ve suffered very bad with depression and anxiety before. Did you have laprascopy before your hysterectomy?

[CrimsonMama]

Hi. I have nowhere near as much expertise as you guys here. I had surgery to remove endo that I never knew I had and it was never fully explained to me. I had excruciating pain, rushed to hospital, was told "all my bits inside were stuck together" and afterwards was put on depo injection to stop my periods. That was over 7 years ago. It was about 2 years after that that I just happened to see the word endometriosis on my medical record and looked it up.Anyhoo, after this many years on depo and lots of weight gain that diet and exercise wont shift I recently reached out to GP. I am 44 now and they said to come off depo to see if that was stopping me losing weight or if I am menopausal.

I asked about my endo and if would come back. The first GP (actually 2nd I've spoke to this about over the years) was pretty clueless. He said come off depo if I want with no sympathy or advise about side effects. I asked about having a hysterectomy and he actually laughed and said that that wouldnt prevent my endo and there was no other options than depo. He said not even menopause would stop endo returning for the first 2 years.

Then I got to speak with another GP who seemed a bit better. She said to come off depo to see what happens (as maybe my periods wont return and its the periods that cause endo to build up). She said if my periods come back I can get the implant which is safer for my bones than depo. She also said (more compassionately) that a hysterectomy would not prevent endo.

Its confusing and I still feel I know so little. But thats the info I have been told here in UK!

[Tootie2008 in reply to CrimsonMama]

it’s unbelievable the little of amount of information there is and the amount of advocating we have to do for ourselves! The amount of doctors who have a donor clue or training in anything which is quite common for women’s health is astounding, I live in Northern Ireland and it’s even worse than other parts of the uk as to what is available, we have no specialists and when I tried to ask to go to our provisional endometriosis centre the hospital said they had never heard of it! So much conflicting advice and stress on us to choose the correct option that we have to live with.

[CrimsonMama in reply to Tootie2008]

Yes I saw there is a specialist in my area and asked if I could be referred but was told I have to try it this way first and only if I get really bad will they refer me! But I want to speak with someone knowledgable as a prevention! Not wait until I get agonising pain and need surgery again!

[Goiaba in reply to CrimsonMama]

This is incorrect and you as far as I’m aware you should be referred to an specialist centre. If you are on Facebook please join the Endometriosis Guidance and Information Resource UK group created by EndoRevisited and they will tell you the exact pathway and what you have to do. This group is amazing and the ladies at EndoRevisited do more for us than these clueless GPS that only slow down our access to appropriate treatment. Hope they can help xxx

[CrimsonMama in reply to Goiaba]

Thank you! I will gladly join and ask there!

[11WildHorse11]

Research DIM, Sulphoraphane and Calcium D Glucarate.... Eliminate as much xenoestrogens as you can. Surgery isn't always the answer and can lead to other issues. I have read some awful patients accounts of how full hysto really done a number on them and the endo came back.