I’m new on here, but most definitely not new to endometriosis!!
I’m finally getting some sense from consultants around having a hysterectomy. I had a telephone consultation a couple of weeks ago (not face to face because of lockdown)
The Consultant explained that I would need a full hysterectomy with ovary removal as I suffer from severe migraines and can’t take hormone therapy. (I do think the migraines are related to endo!!)
I have been asked to research into the full hysterectomy to see how I feel about going straight into the menopause and the potential risk to my bones etc and have a follow up appointment in 2 months, which I agree is a sensible thing to do.
If anyone would mind sharing (as much or as little info as they feel comfortable with) I would be really grateful.
My personal experience/situation so far;
I started when I was 10, always in excruciating pain, spent my playtimes at primary school inside wondering what was happening to my body. Was finally diagnosed at 19. Have 2 children and don’t want any more and am coming up for 25 years of suffering. I can’t tolerate the pain or moods with it anymore. I find I only have 1 week out of 4 where I feel like a normal person, the rest are leading up to it, having it or trying to recover from it before it starts all over again.
Thanks for reading, any help gratefully received 🙂
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Crochetcrazed
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I had an ovarian tumour in 2017 and it transpired I also had Endometriosis and fibroids.
It took years,even decades to be diagnosed.
There was no doubt the tumour needed to be removed but, at 45 that was a huge decision...in that they had to take everything due to my prognosis.
If I could have left an ovary in order to support emotional/physical etc well being I would have...My advice is do not remove them if they are not damaged....retain them and let them work their magic....
Remove your ovaries and potentially face quite a few years of hormonal distress....Forgive me,this does not happen to everyone but,I’d buy a new set if I could!
I have had two excision surgeries since the total hysterectomy and removing my ovaries did not and sadly will not abate this disease....or did not for me!
Please do get in touch if I can help further...please don’t be afraid,just research and connect with like minded souls!
I had a hysterectomy and endometriosis removal November 2018, my ovaries were kept as the consultant said they were not damaged, I was 45 years old at the time. I feel like I have got my life back, I do use HRT gel daily as my ovaries shut down. Good luck, I hope the hysterectomy will help you, I know it is not a cure, but for me the right decision, I have not regretted it. X
I hope this a positive story for you but do make your own research and ask your consultant lots of questions !!
I am 45, I had a total abdominal hysterectomy including both of my ovaries nearly 10 weeks ago due to 2 cysts , one on each ovary, multiple fibroids and polyps . I had reached total breaking point with my periods (horrendous and pain was unreal!) so the hysterectomy didn’t phase me.
There was a discussion that some of my pain and blood clotting periods being endometriosis related but I hadn’t had an MRI, only Ct scans, ultrasounds and a hysteroscopy . The cysts were the main focus due to cancer concern
Once in surgery, endometriosis was found everywhere . Fallopian tubes, ovaries, vagina wall, my omentum, my appendix , bowel and bladder. Diagnosed at a level 4. My hysterectomy went ahead and my appendix and omentum were removed . The endo adhesions were removed from my bladder and bowel
I am actually totally relieved I had my ovaries removed, before surgery, I had the option of leaving one- but at the post operation appointment, I decided that if I was going into this surgery , might as well take it all ! Just as well I had made the choice, as none of us knew how serious the endometriosis was,
The biopsy of the cysts came back clear from cancer
For me now, I am in a surgical menopause. I am not allowed HRT because the endo was severe , HRT can encourage it grow and as I have had a full ‘clear out’ so to speak my consultant said it needs a chance to fully regress .
I feel great, utterly relieved , it’s been the re-start button I needed.
Don’t get me wrong, the recovery has been tough but worth it. I have no pain - nothing.
Just a few moments around my scar
For me. Mentally, I am glad I have had such thorough surgery so there is very little in there for the endo to come back and attached itself to . Also, with no ovaries, you won’t produce estrogen (most important!) as estrogen is what endometriosis feeds on !!!
It depends on your age, if younger than 45, the surgical menopause can be a tougher and they will consider HRT
I am managing my menopause symptoms with Sage tablets which are gradually kicking in. I do yoga and walking , healthy diet (I’ve lost a stone strangely enough!)
It’s a massive decision for you ! I did lots of research, put myself in a good mindset and had a brilliant consultant, a phone number for a group of nurses to call if I felt concerned leading up to the op (this is NHS - not private !) so that final choice is one you need to be comfortable with so you a ready for that surgery day. Do feel free to message me directly if you need to . Good luck
What a decision to have to face on top of having endo! I had a hysterectomy five months ago for stage four endo. I am 37 with no children. They left both of my ovaries but took everything else including cervix and tubes. Before my op there was discussion around removing ovaries as I have had years of large cysts, one of which required surgery due to rupture and others which had slow leaks and caused pain.
I had been on zoladex for 6 months before surgery and had a terrible time in kind of chemical menopause. Horrific mood swings, bone pain, sweats. I did get some estrogen add back patches which helped immensely.
In the end we decided to risk it and leave my ovaries as my surgeon was worried about having me on hrt for potentially another 15 years and the effect it would have on my heart and bones. I think you just have to weigh up whether you want to risk that, depending on how long you’d have to be on it or if you’d rather risk bad menopause symptoms if you can’t take hrt.
Have they discussed the possibility of having a mirena coil fitted? This particular coil sits in the uterus/womb and delivers progesterone (only) to exactly the area where it is needed. This then counteracts the excess oestrogen, produced by the ovaries, which is usually the cause of endo. It's better to have the progesterone delivered this way, as it means the hormone is in the area where it needs to act … plus only a low dose of the progesterone is delivered … and it is not coursing all over the body (as with tablets or patches), but is in the place where it needs to act.
A mirena coil worked for me in my 50s and saw me through the menopause. Once we knew I was past menopause, the coil was removed. I have not had any pains since the removal, plus when the mirena was first fitted, it took just a few months for my body to adjust to the progesterone: during this, my dreadful, agonising monthly pains were gradually reducing to nothing. I then had 5+ utterly pain-free years, by which time I was post-menopause. If you are much younger than I was, then you could have new coils fitted every 5 years.
Obviously, your situation may be very different , but I would recommend asking about a mirena if it has not been discussed with you. Because of my dreadful pains, my mirena was inserted under a general anaesthetic - which enabled my consultant to check everything. Plus, this was all under the NHS.
It is worth asking about if it has not been discussed, but we all do seem to differ so much with how and where and when endo affects us.
I hope you get a solution and that it works for you.
I’d like to say a HUGE thank you to everyone who has very kindly taken the time to give me their opinions and experiences in this. I’d also like to say that I may be in a very different situation, but have empathy for everyone. I don’t think anyone should be suffering...... hate to say it, but if it was a man suffering this, I think a little more research might have been done? I may be wrong?!
I think I’m lucky in that, I have the pre-period pains, but think I muster through without endo pain when not due on or having period. From what I have read and researched, I really think that a hysterectomy whilst keeping my ovaries is where I want to go.
My Mum has suffered the same, since 10yrs old. She had a heart attack at 46 which they believed was related to endo. She tried all medications including the merina coil and what I witnessed is not something I want to risk going through. They now can’t operate on her and she is suffering from additional health issues as a consequence.
I know we aren’t all the same, which is why I get so frustrated when they suggest I take the pill. I’m afraid it isn’t ‘one size fits all’. Sorry for the rant, but it has felt like I’m not believed for such a long time, I constantly feel I’m being fobbed off or scare mongered.
I am SO grateful and I hope that each and every one of you finds their comfort and happiness. I’m sure I will have some questions, if you are ok for me to message you? Thanks again!! #strongerunited
I had a hysterectomy due to endo in pouch of Douglas and uterosacral ligaments and fibroids 3 yrs ago, left ovaries as I was 42. Have had pain ever since, had a failed hernia op as they couldn’t find this hernia that showed up on 3 scans! Been told imagining pain, have been offered to remove the ovaries but I don’t want too. Was about to have a lap to see what’s what a few days before lockdown so it was cancelled. Pain is mainly on right side. Stabbing aching with shooting pains up vagina and rectum. Gets you down as if I have ovaries removed and have a really bad surgically induced menopause then what? Just have to take each day at a time and keep the hot water bottle on the go! The hyst wasn’t as bad as I expected as done laparoscopic.
Just rest up loads after as it takes time to heal internally. Good luck x
Hi Crochetcrazed, thanks for your post, its amazingly scary how all of us endo-girlies follow the similar path. I have a similar history but I just wanted to let you know what life is like now, after an early menopause at 39. I was diagnosed with endo at 21, after 6 years of pain and confusion (and after many mis-diagnosis, got to love those :)). Fast forward to in my 30's and miscarriages, IVF, miscarriages, and even more IVF and my one little left ovary (I had my right ovary taken out at 30 as it was disappearing into my bowel, for a reason only known to itself..!) called it a day. I went straight into menopause, like bamm, then within 4 months, started the horrendous hot flushes, migraines, mood changes, skin changes and anxiety/irritability. My menopause was horrible, I wont lie to you, then I was put on HRT, Tibolone, which worked really well for me, it didn't have high amounts of oestrogen, as I was initially put on a patch and it caused all my endo problems to rear its incredibly ugly head, it has some progesterone and has some testosterone too. After a year or two I tried to come off of it, for no other reason that I forgot to order it and then there were manufacturing problems (this happens with HRT unfortunately), and within a couple of months every menopausal problem came back. And us endo-girlies have suffered a lot in our time, pain pushing its way, insidiously, into every area of our life, but the menopause caused problems for me in its own way, especially within my head. We had just adopted our beautiful toddler (and going through the adoption process while going through the menopause is a very interesting roller coaster ride..!) so I was, in effect, desperate for the HRT, and read up all about the bad press and still decided that I had to be 'normal' for our family, that I couldn't be curled up in a corner for days at a time, speaking to my dead grandfather (he'd been dead for 20 years but we had a beautiful conversation about dahlia's) after 6 nights of not sleeping..! And then a final answer to that question came after a diagnosis of osteoporosis at 41.. It was confirmed via DEXA scan, and the specialist said it had probably been caused by all the down-regulatory drugs that they gave me during my 10 years of IVF treatments, and not my early menopause (although that didn't help). They should have been making me take a good Vit D/Calcium during all of those treatments but again, with endometriosis it causes strange little side-lines for itself..! So endo-girlies, ALWAYS take a good vit D/calcium tablet every day, just in case
Anyway, i'm sorry if this post makes you even more confused, which i'm sure it will. Everybody is different, my mum went through her normal menopause at 52, the average age, with no real problems. My mum in law had to have HRT for about 20 years as she suffered terribly with 'the usual suspects'. I have to have HRT (because of the early menopause and the osteoporosis) for at least that amount of time, and more. There are lots of different HRT out there, if you need and want them, after your decision to (maybe) have a hysterectomy. Don't get me wrong, not having periods is a beautiful as I had hoped it would be..! I am still in pain, but that's through the damage the endo had done and now a whole host of joint problems, bloody endo, grrrrr..!! But not having that monthly carnival of 1) having a week of horrendous pain, 2) coming off the medications after the week of horrendous pain, 3) hormonal changes causes migraines and other lovely, severe PMT issues, and 4) back to the week of horrendous pain..! Enjoy the ride..!! :)))
Anyway (again), sorry for the long rant/post, please just ask if you need to know anymore info about my glorious arrival into my 40's.. Big loves to all endo-girlies x
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