Girls I’m at my wits end, I’ve had surgery after surgery, diagnosed at 22 and now 33, my endo has been relentless, excruciating and taken so much from me. I was incredibly lucky to get pregnant after having ivf after surgery in 2018 and my pregnancy was a utter dream, I had zero pain - it’s was amazing!
Fast forward to now and I’m in the exact same place I was before, my pain has always been all month long, it starts at the end of my period and intensifies up to ovulation, which is utterly horrendous after ovulation it gears up again until my period, which is all consuming and then the whole thing repeats. I’ve tried every clinical and alternative treatment imaginable, from the coil, temporary menopause, surgeries acupuncture, Chinese medicines, supplements, no sugars, no dioxins, no estrogenic food etc etc etc to no avail. My endometriosis returns so quickly and is has always been deep infiltrating so much so that my left ovary permanent hangs next to my bowel and eventually gets stuck, everything time they release it, it sticks again. All my surgeries have been at specialist endometriosis centres I should add.
I’d love to have another child but completely aware that may not happen, and even if it did I worry about how I would manage as I’m living off pain killers at the minute. I know the myths about a hysterectomy being a cure for endometriosis but I just want to know if it’s worked for anyone? Surely there has to be some hope? I really feel like it’s my only option as I can’t function like this anymore.
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ElizaEliza
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I asked for a hysterectomy and was told no - 29 at the time. But my consultant said he would remove one of my ovaries, I had it done a few months ago and I’ve never felt better! X
I have had relentless endo too, it’s been a nightmare so much so with the never ending surgeries and pain the last year I haven’t been able to work. I’m lucky like you in that I have had a child but I did want more. I made the decision a couple months ago that I would need to give up that dream in the hopes of getting well. So I have opted for a full hysterectomy. I read Elizabeth Gilbert’s (in case you do t know her she’s a writer most famous for her book Eat, Pray, Love) write up on hers and that made the choice easier for me. I hope it helps you too.
I’ll copy her writing here for you below. I will let you know how mine goes and if it helps but this is what Elizabeth Gilbert said:
“Hi!
Here I am this morning at the doctor’s office for my two-week checkup after my hysterectomy.
Many of you have been asking after my health (bless you for the love!) and I wanted to report: I’m totally clean and clear.
Everything is healing beautifully, and I feel WONDERFUL. My energy is back to normal, and I’m walking miles a day again. (Don’t worry: Walking is the best therapy for post-hysterectomy strengthening —and I’m not doing anything dumb like lifting heavy objects, or tiring myself out.❤️)
In the last two weeks, I’ve been feeling a wild and joyful spirit rising within my body. It’s like every part of me knows: My years of pain and depletion are gone. The tumors, polyps, and endometriosis are gone. The massive constant hemorrhaging and anemia and threat of uterine and cervical cancer —all gone.
I share this joy with you today because 99.9% of my followers are women, many of you are my age, and I think it’s important that we talk openly about our changing bodies. Everyone has a different experience, but I want to share mine.
So...to answer some of your questions:
Did I try natural/holistic/goddess/mind-body treatments, herbs, and dietary changes before resorting to surgery?
YES, for years.
Did they work?
No, not for me.
Did I then follow my intuition to find a fabulous all-female surgical team, once I made this choice?
Yes.
Do I feel like less of a woman, now that I have no uterus?
Absolutely—but only in terms of sheer metric volume. (HA!❤️)
Do I feel like I’ve had my Divine Feminine Power carved out of the Core of My Sacred Being?
Um...look at my face, please. Does this look like the face of a woman who has lost her Divine Feminine Power? ❤️
Was it painful?
No. I had one bad night in the hospital of post-anesthesia nausea, but I’ve been great since. (They sent me home with masses of Percocet, but I didn’t need it.)
Have I lost sexual sensation?
No.
Do I feel empty inside?
No. I feel ecstatically free in my body like I haven’t felt since I was a kid. I feel like Tom Sawyer. As soon as I fully heal, let the games begin. If you guys think I had fun romping around the world before...WAIT TILL YOU SEE WHAT I BECOME NOW. ❤️
Thank you so much for this reply! That’s so promising to hear, have you noticed your pain levels have improved? How are you finding the menopause? Fingers and toes crossed it works for you! I am not familiar with Elizabeth Gilbert, I’ll look into experience but I can see how her words gave you a lot of hope!
I’ve had a hysterectomy and both ovaries removed and my endo pain got worse! The key thing is to have endo excised either before you try a hyster or at the time of surgery. It’s about finding the right person to do the surgery. NICE guidelines say you need to be treated by someone with a special interest in endo and if you qualify then treatment at a bsge specialist centre.
I’m so sorry to hear you were left with more pain, how is your pain now? I hope it has improved? Yes I’m currently under a bsge specialist centre in London, it’s a big decision and not something I’m ready to do right now but I need to consider what options I have left
I understand that. I’m doing much better now but that’s after 3 more surgeries since hyster - last 2 with BSGE centre and last one with their deep infiltrating endo specialist.
Very glad to hear you are at a bsge centre so just keep asking them lots of questions and what your options are. Good luck.
Hysterectomy does NOT help for Endo, only for Adeno!!! The only thing you're relieved of is monthly bleeding and pain IF you only have Endo. Please look into better care/management of your Endo, it sounds like you didn't get expert help (get a wide Excision specialist surgeon with extensive experience). Adhesions can come back if not the right gaze is used. You might want to use supplements that help with adhesions after treatment too, and special massages and pelvic floor physiotherapy... good luck!
Thanks for your reply, I was treated by an excision specialist for each surgery, I have taken countless supplements and I’ve also had pelvic floor physio assessment which was normal. I have been dealing with this for more than 10 so I’m pretty clued up on endometriosis management but I’ve exhausted all of the above
Hi Eliza, firstly I am so sorry that you like many of us have been and are still suffering with Endo and a whole plethora of things ;( its unforgiven and relentless. I don't often post on here for a number of a reasons - but your story is so similar to mine minus the children - I first noticed my symptoms at the age of 15, no official diagnosis until the age of 34 and many surgeries later, that's all my adult life of trying to live with and not managing it, like you I tried all sorts of treatments, holistic approaches, nothing absolutely nothing worked for me and each month was becoming unbearable. I decided I didn't have the strength to pursue IVF and also had the possibility of having adenomyosis hanging over me - I simply couldn't take it anymore. I seriously have so much respect for mothers who suffer with this and still manage to look after their families. I wanted to pick up on your question about having a hysto - sadly I found the Endo community really split with this and felt like I was the devil incarnate for wanting this....so my advice to you is if you've exhausted all treatments and tried absolutely everything I fully support you with wanting to do this, this decision isn't for anyone else, its for you and your family.
I have no regrets with having mine done, its giving me back my life and my health / pain has improved to no end, not 100% but do you know what I wasn't looking for that, I just wanted some sense of normality and like you, we all know that having a hysto isn't a cure BUT it does give you some control over your life and allows you to become involved so much more with day to day things. For another woman to say "don't do it" is ok, that's their opinion, my surgeon was amazing, he could see the impact it was having on my life and not only mine but my husband and family too, I can't have children naturally but there are plenty of other ways and I am ok with that, why, because I am now healthy enough to look after myself and someone else! Woman shouldn't dictate to other woman what they can and can't do with their bodies, we are all living with this horrendous disease day in day out and don't get me wrong I am fully aware that my hysto might not be the last surgery I have, this is with me until the end. If you are comfortable with your decision, discussed it with your family and found the best surgeon you can, then go with what you feel is right others are right, its great to make sure all the visible endo is excised at the same time. The one thing I would say is if you are heading down this road (I was 34) that you ask to be under the care of a specialist menopause consultant if you decide to have your ovaries taken too and you look at the British Menopause Society guidance for HRT in women with severe endo below the age of 40, arm yourself with this and discuss with your health team. I went with everything being taken because my endo was aggressive and my pain was debilitating during ovulation and my period, I didn't get the right level of care needed in the respects of HRT post op and this is partly due to lack of education within the medical profession for surgical induced menopause and endo - I am still on this journey now, but that aside life does get better, in fact its amazing and a joy to be relatively pain free! Everyone is going to have a different story, don't let that overwhelm you, listen to your intuition, the fact that you are already thinking about it is a major step forward. I hope that this helps in some way x
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others are right, its great to make sure all the visible endo is excised at the same time. The one thing I would say is if you are heading down this road (I was 34) that you ask to be under the care of a specialist menopause consultant if you decide to have your ovaries taken too and you look at the British Menopause Society guidance for HRT in women with severe endo below the age of 40, arm yourself with this and discuss with your health team. I went with everything being taken because my endo was aggressive and my pain was debilitating during ovulation and my period, I didn't get the right level of care needed in the respects of HRT post op and this is partly due to lack of education within the medical profession for surgical induced menopause and endo - I am still on this journey now, but that aside life does get better, in fact its amazing and a joy to be relatively pain free! Everyone is going to have a different story, don't let that overwhelm you, listen to your intuition, the fact that you are already thinking about it is a major step forward. I hope that this helps in some way 
Severe endometriosis pain and pregnancy 
Undiagnosed rectovaginal endometriosis? Please help!
How are you diagnosed with endo
is a hysterectomy the answer? 
Can this pain really be caused by endometriosis plus a cyst?
