Hysterectomy for treatment of endo - Endometriosis UK

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Hysterectomy for treatment of endo

Nippersgirl
Nippersgirl

Hi there

My specialist wants me to have a hysterectomy (leaving ovaries in) to treat my endo as I suffer from heavy bleeding. I am 34 and have no kids. I am fine with not having children but am worried it will not fix all the pain I suffer. Is there anyone on here who has had this procedure done and is happy to share their experience with me on here? Thank you! I have just over a week to decide.

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I had a folopian tune removed and lots of endo. After I couldn’t conceive I had a ablation, why have a period of you can’t have kids. It has been three years of wonderfulness!!! No period no pain!!!

Hi Nippersgirl.

Sorry you are having to consider this option. However, I was in a similar situation many moons ago- and after years of debilitating symptoms, umpteen tests, tablets and being told my problems were down to many things other than endometriosis, I was eventually diagnosed with Stage 4 endo’. By this time I was almost incapacitated. The consultant said my insides were ‘an absolute mess’ . I was 39 at the time and had a 10 and 7 year old. So, for me It wasn’t really a problem making the decision to have a hysterectomy. I had everything removed, including both ovaries - as the endo’ had adhered to almost anything and everything it could! They were the size of two grapefruits. For me, the relief was almost instant (after the initial 6 week recovery period) The release from no longer passing out and being bent over double - to not having to deal with huge amounts of blood loss and horrendous clots and in-between bleeding was a small price to pay.

I suppose it’s difficult to say whether or not your experience would be much the same. I would like to hope if this was your choice, it would bring you some relief with regards to no longer experiencing heavy blood loss - bearing in mind that all other options have been tried and tested before you consider surgery!

You didn’t mention any treatment, or prior investigations. If considering a hysterectomy, it's important to understand the probable outcomes and the alternatives that may be more appropriate for you. We are all different and what could be a positive outcome for one might be totally different for others.

I wish you luck-and better health soon. And do hope you find some respite one way or another.

x 💐

Hi Minnskimoo

Thank you so much for your msg. I have had two surgeries to remove my stage 4 endo with my left ovary buggered and adhering to my pelvic wall. I was told after my second surgery that I was ‘riddled’ with endo. Uterus, both ovaries, bladder and bowel affected. I have suffered pain and heavy bleeding since my period started at age 12. Of course back then I was told the pain was in my head. I had to wait until I was 31 to have my first surgery as I had to go through the public health route. My specialist and gp have tried everything EXCEPT for the Mirena. I have refused this treatment as I am hormone sensitive and have heard too many horror stories. I know that if something was to go wrong I wouldn’t mentally cope.

My whole life has been so affected and held back by this condition, I’ve become so ill I cannot work. I’ve never not had a job!!

I was told about this forum from someone on Instagram and I so pleased I found it! It’s lonely having no one to relate to.

My next meeting with my specialist is next Friday and I have to tell him what I’ve decided. He is happy to go in and just have another look and treat any endo they can see and I can think about a hysterectomy some time in the future but gosh, I don’t know if I should just bite the bullet and get it done aaaahhh it’s such a big decision!!!

I’d also be interested in this, I’m also 34 no kids, but also no plans for kids. I’ve only ever been diagnosed with stage 2 endo but it’s been debilitating for me and I’m considering hysterectomy as I need to have no cycle so I have no cyclical pain, fatigue, mobility problems - I’ve tried the coil, the pill, and 2 surgeries (although last one was only last week).

I hope that you get some good advice on this forum and that you make the right choice for you. Lots of hugs

Nippersgirl
Nippersgirl in reply to rubysoho

Hi rubysoho

Thank you for your message.

It’s such a big thing to consider isn’t it? For me, it would be wonderful to no longer have the heavy bleeding-I bleed for two weeks of every month now and have had to stop work. I’ve never not worked!

I just worry that it won’t fix the pain and I could end up with other problems..... my endo isn’t just in my uterus, it’s my ovaries, bladder and bowel too. My left ovary had stuck itself to my pelvic wall and had twisted itself around something else I was told after my last surgery. They fixed that amoung everything else but I was told that that ovary was no longer functioning.

It is a life changing surgery in more ways than one and is weighing very heavily on me.....

Ladies, hysterectomy is not guaranteed to eliminate endo. Partial hysterectomy (leaving ovaries in) does help some women but then there was usually also adenomyosis. Sadly, only full hysterectomy has shown lasting relief in endo sufferers.

Also, when it comes to removal of endo lesions - please ask for excision, not ablation. Ablation is not the best procedure for endo removal because recurrence rate is higher and faster - confirmed by many endo sufferers through experience. If the lesions are to be removed it has to be through excision surgery.

There is a wonderful FB support group with info on endo, specialist doctors, research and treatments available. There’s a also a list of doctors, created by members from all over the world - docs that they have had good experiences with. The group is called Endometropolis and they have a sister group for dark times, where you can just vent or rant, whatever you need to alleviate your frustrations and stress. The chat group is Endometropolis Lite.

Hi zerendipity,

Thank you for your message and I will check out the chat group you have suggested. It’s so helpful being able to talk to other endo ladies. Also what you have said, I am definitely aware of and am taking my choices very seriously. My surgeon does excision.

In addition, there are other very serious medical considerations to make when deciding to have a hysterectomy. Removing ovaries would affect the regulation of your bones, heart and other vital organs, so please make sure you are aware of, and ask for, mitigating treatment and regular monitoring.

hi there i had a hysterectomy done 5 years ago as was in so much pain from the endo .also leaving my overies .ater i got over the operation i felt like a new woman it was amazing and would recommend this to anyone .but unfortunatly .last year i was rushed in to a&e and had surgery to clean out my tummy as i had a ruptered endo cyst ...........yes its back .due to have another lap next week as in so much pain again .good luck let me know what you decide .

Hi ericwatts

Thank you for your reply and I’m so sorry that it has come back!! This is what I fear for myself as my uterus is not the only place the endo is. It’s also affected my ovaries, bladder and bowel.

My specialist has offered to go in and treat what endo he can find for now until I’m more sure but as it’s through the public health system I’m aware of how long it takes to get treated. This will be my third surgery to treat the endo.

Please keep me posted on how you get on, take care xx

It is often thought that removal of ovaries would help as it’s the primary source of estrogen. So remove ovaries and this estrogen dependent disease is under control. But no, endometriosis lesions produce estrogen too, so it can stimulate further spreading and growth of new lesions even after a full hyst.

It’s like a parasite and I hate it. I’m afraid to sneeze, cough, stand up carelessly or turn my upper body, cause I never know when it’ll stab. One week a month I’m home bound cause you never know what the period brings. One time a doc suggested I should attend yoga classes. She was lucky I was in a good mood.

I’ve been taking pycnogenol and I think it helps. Getting my hypothyroid condition medicated made a big difference in bleeding, so I am less anemic.

Hi Nippersgirl,

I am wondering what you decided? I'm searching on this as considering a hysterectomy myself. I don't have kids but have never wanted them, my lap 3 years ago diagnosed stage 3 endo. My surgeon said my surgery would last me 10 years. It's lasted me 3 ! I understand it won't completely cure my endo, but if I could get the pain to a level I can cope with and not have the prospect of multiple surgeries ahead then that would be great 😊

Hi I had a hysterectomy 20 years ago and then had my ovaries removed 2 years later due to chocolate cysts on ovary. To get rid of endo I would suggest having both ovaries removed as well to eliminate endometriosis as the oestrogen will flare it up again, it was the best decision I ever made but the pain started again 5 years after due to adhesions, I now have a frozen pelvis. I am waiting to have these removed in the next few weeks.

Hope this helps x

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