I’ve suffered with endometriosis now for over 10 years now and quite frankly I’m just sick of it. Exhausted. Drained and I’be just had enough. It’s stage 4, and very active. The more laparoscopies they do, the worse it seems to get.
Now I know a lot of people feel the same, of course they do. But I’ve been thinking recently..at what point is it acceptable to go “Woah..hold on I don’t want this anymore” and ask for a Hysterectomy?? Do you have to be in pain for 15+ years? Cause every consultant I’ve seen has said there’s no way that they’ll ever do that on someone my age (21). Even though I’ve explained that I’m clinically depressed and can’t do anything through the pain. I’m not responding to any medication my consultant has given me and I’m at the end of my tether.
I of course understand that yes I’m very young blah blah blah. I get their points I really do, but I don’t want kids. I’ve never wanted kids, neither has my partner. I’ve always been very open about this with all consultants and GP’s etc. I’m just not a maternal person and I respect all parents cause they do a fab job, but it’s just not something I want.
With that being said..what do I say to them? I’ve really had enough, I’m sick of not being able to live my life due to this pain. It’s completely robbed me of all my teenage years, I lost out of a lot of school and college due to it and I want my life back! I want to take control of my own life, not have it controlled by this frickin disease!
My partner and I have obviously discussed this loads, as well as with my family and they all seem to agree with me..they’ve watched it take control of their daughters/sisters/cousins/fiancé’s life and have had to sit there with me in hospital, or whilst I can’t stop being sick.
Am I going completely mental or not? Do I make any sense? I just need some help 😔
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emcoll
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Hello sorry to hear your having such a bad time with it.
1st are you being seen at a bsge centre? Have you asked for second opinion from other specialists?
Are you aware that a hysterectomy isn't a cure for endo? As by definition the endo cells are outside the womb. Yes some people may get some relief from having a hysterectomy but not everyone and some it doesn't help at all. Also it's not just fertility that is obviously effected by a hysterectomy but also bone density loss, heart health etc. Which your Dr's will also be factoring in. As at 21 your bone density is still increasing, from memory it doesn't reach it's peak until 25 or so. If this is something you want to persue ensure your read up on all possible side effects, read about other people who've had one for endo and what their experience was etc.
I’m aware it isn’t a cure yes, but I’ve been told it would vastly improve my symptoms. I suffer with many other health conditions, of which some the pain from my endo makes those conditions worse.
They put me into a clinical menopause before, which helped but then they took me back off it. The only thing that is improving my symptoms is when I have no periods at all. I’ve been on the pill (all different kinds), I’ve had the coil, clinical menopause and the only option left now is another operation. We’ve literally run out of options and I’m just so fed up I don’t know what to do anymore 😔
It’s something I’ve been thinking about for around 18+ months now and I’m done. I’ve had enough and I want to start living my life again
Hey I think you sound very mature and like you know what you want. If the medicated menopause was helpful then maybe discuss with your consultant that you would like to continue on that but on the proviso that in a certain amount of time you can opt for the hysterectomy. As for the "you might want kids" argument, maybe say that even if you did change your mind which you won't, you could easily adopt or Foster. Children are not the bee all and end all, and they also need to remember that you have to be healthy enough to actually look after the kids you have! As a disabled mum of 2 I can tell you it's not a cake walk and my kids miss out on a lot. So they shouldn't really take that into account for me, though I do get the risk with bone issues and heart problems. So you could negotiate doing it at 25 when the risk lowers, and just do the menopause medication until then? Xx
I’ve asked to go back on the medicated menopause but he’s refusing saying it’s too risky, when one of the other consultants I spoke to said it would be fine. I really don’t know what to do for the best.
I just feel like turning round and saying “you’re not the one suffering the pain everyday. You’re not the one who physically struggles to walk each day, or throws up each morning”. I understand them I really do but they also have to understand and respect me. I’m the one who’s suffering and living this. Since I was 10 years old I’ve had no life; nothing because of this bloody illness. I just want someone to listen 😔 xx
As said above, a hysterectomy doesn’t cure endo, not long term. I’d advise really researching because so many women said that within 18 months to two years all their symptoms were back.I totally feel you, I have suffered endometriosis since I was ten years old, I was finally diagnosed at 41, with stage four, basically frozen pelvis. despite all my efforts during my 30’s to get help, only realising in my 30’s that what I experienced wasn’t normal periods. After my last lap, I was offered a hysterectomy, I went on the waiting list for it, but in the mean time I really extensively researched everything and anything, and really looked into my diet and went on a mission of working out what foods added to my pain, along side exercising when I could, it did help me manage.
I’m pretty lucky that I’m 50 at the end of the year, and am most definitely in menopause, and it’s life changing not bleeding for 80% of your life, and not having such daily chronic pain, I still have pain each day, but it’s manageable, with the odd chronic flare up, and now I’m glad I managed to get to this point.
I doubt they’ll want you to have a hysterectomy so young, and especially removal of ovaries, could have a massive impact on your future health, that you would need some kind of hrt, which kind of defeats the object of having a hysterectomy, and hrt comes with its own risks.
Have you tried the Mirena coil? Unfortunately it didn’t work for me but know it has helped lots of endo suffering ladies, everyone is different with it.
I hope they can at least let you have the drugs to mimic menopause for a few years, I’m not sure how I would’ve felt being diagnosed with it so young, the thought of having to suffer another 30 years I’m not sure I could cope with, but I didn’t get that choice, 30-40 years ago endometriosis wasn’t really a thing, it was put up and shut up ‘it’s just women’s stuff and it’s natural, and get on with it’
Hey, so sorry to hear the pain and distress you are going through ive been there myself. I had a hysterectomy 9 weeks ago and best decision I've made, feel like a different person. Granted I'm 40 and have a little girl so appreciate its very different circumstances. I get how frustrating it can be though feeling like you are not being listened to xx
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I think you sound very mature and like you know what you want. If the medicated menopause was helpful then maybe discuss with your consultant that you would like to continue on that but on the proviso that in a certain amount of time you can opt for the hysterectomy. As for the "you might want kids" argument, maybe say that even if you did change your mind which you won't, you could easily adopt or Foster. Children are not the bee all and end all, and they also need to remember that you have to be healthy enough to actually look after the kids you have! As a disabled mum of 2 I can tell you it's not a cake walk and my kids miss out on a lot. So they shouldn't really take that into account for me, though I do get the risk with bone issues and heart problems. So you could negotiate doing it at 25 when the risk lowers, and just do the menopause medication until then? Xx
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