I have suffered with pain since I was 11 years old and am now 38. I have had 2 coils, 2 laparoscopys, tried tri-cycling my combined pill for years, the mini pill, hormone injections and HRT. I have pain for 7-10days on a 2 weekly cycle and feel like my endo rules my life. I feel like I am not able to be the mum I want to be for my girls as all my energy goes into dragging myself to work and running the house. Food shopping is my nemesis as i can't concentrate and the pain makes everything feel like a huge mountain. Im permanently tired due to the combination of pain and painkillers. My husband is amazing, but I see his face fall when I tell him the pain has come back again when we are going away, have a night out planned or even better the morning of a family wedding we were looking forward to.
I've recently had a laparoscopy and they found my coil has perforated my uterus completely and there is nothing more medically they can do. The injections were the only thing that worked but I can't be on them for more than 6 months. I've been offered a hysterectomy and I'm so worried about the HRT risks and the fact that endo can still be a problem after surgery.
I feel lost and confused but desperate to be free of the pain that's ruling my life. Any advice or experience from people who have decided to have the surgery would be so helpful right now. I never reach out like this and push through without allowing myself to really feel the effect endo has on my life so this is very alien to me.... hence the long post.... apologies and thank you!!
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Louisewhite84
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Hi. I have had a total hysterectomy and decided to take HRT. My pain was daily with stage 4 endo and adenomyosis. It’s coming up to a year after my surgery and so far I’ve been pain free. I’m 42 and plan to stay on HRT for a couple more years. I did a lot of reading on HRT and decided it to try it as the potential benefits were worth it for me - was pretty scared of an immediate surgical menopause after years of daily pain I just wanted a bit of normality! HRT is a risk to endo growing back but I take daily progesterone to try and minimize the risk. I haven’t looked back from my surgery but it’s a very personal choice. Recovery can be difficult as it’s not just a hysterectomy - they will cut as much endo out as possible. Make sure your surgery is by a specialist at an endo accredited centre. It’s a difficult decision but so far for me it has been worth it! X
Hi! Thank you so much for sharing it's so helpful to hear you had such a positive experience and that you feel well! Can I just ask are you outside of the UK?
I feel a bit at the mercy of the NHS and haven't heard of an endo accredited centre.
I’m in the UK. Google BSGE and you’ll find the website and be able to search for accredited centers. Mine was in Glasgow. Really important you get a surgeon who specializes in endo if you have advanced disease. You’ll have a better outcome in my opinion.
No need to look at BSGE! They don’t offer any ‘new’ treatments! It’s the same old! Cyclic pill or Zoladex for 6 months! You’re likely to wait years for surgery! Longer than with a general surgeon! Xx
Hi Louise. I'm 34 and I had a hysterectomy 18 months ago. It's a huge decision and I saw a psychologist for a few sessions to help me consider how I felt about it and whether it was the right decision for me. As many people will tell you, hysterectomy alone isn't a cure for endometriosis. Everytime I asked questions like yours that seemed to be the response. Obviously it is true so for me it was about considering all the surgical options and talking to consultants about the right decision. I wanted to ensure that excision surgery would be performed alongside the hysterectomy. I also considered all my options around removing or keeping my ovaries.
I chose to keep my ovaries if possible to prevent menopause but some people have suggested this could increase the risk of my endometriosis reoccurring. I chose to take this risk because I was not ready for menopause (I had hormone blockers like you and it wasn't easy). My surgeon saved one ovary and she's done her job. No menopause.
I learnt whilst considering surgery the difference in different consultants. The first consultant recommended total hysterectomy - open surgery and ovaries removed. He wanted to do ablation rather than excision and seemed to think hysterectomy would be enough. I chose to speak with other consultants and in the end had laproscopic surgery, with excision and one ovary removed. I had stage 4 endometriosis which had begun to infiltrate my bowel. I was able to see the photos of my surgery (at my request!).
So what i would suggest would be consider all your options and the repercussions including the psychological ones as there are never any guarantees.
For me, it is the best thing I have ever done. I am pain free for the first time since I was 14. My nemesis was food shopping and climbing the stairs - when my daughter would want me to go back upstairs because she couldn't or wouldn't go to sleep I would often think I can't then have to pull myself up with handrails on both sides.
I can now run up and down the stairs without thinking. I've lost weight and started running. I can eat what I want without worrying. I don't bloat or bleed or live in fear.
Recovery is really long (even with laproscopic surgery) so you have to be patient but I was in less pain coming round from anaesthetic than I was going into surgery.
Because I kept an ovary, I still ovulate and I get some very mild symptoms at ovulation so I still track that. They last 24hrs and are usually a headache and fatigue.
I hope this helps and I'm happy for you to ask me questions if you want
Thank you so much for taking the time to respond and share what you've been through. It's so reassuring to hear that although it's a really big decision it has made such a difference to your pain. What you are describing is what I'm desperate for. To feel well and pain free so I can be better for my girls!
My consultant said they can do it laparoscopically which is good but they did not seem keen to leave my ovaries. That's helpful to know it is an option and I can discuss it more with them.
I don’t really know is this is a help or not… I only found out I had endo after a growth being found on my cervix. I have been to my doctors many times for pain and swelling and told all the usual ibs and food intolerances but now finding out I’m stage 4 endo this is clearly what the problems were! Whilst I was in hospital I was prescribed provera tablets 30mg a day and all my pain and swelling just stopped! I had an mri after starting these and my consultant asked was I on anything as the endo seemed to be inactive on my mri!so I said yes provera. So she tells me I need a full hysterectomy and bowel surgery! This hit me like a ton of bricks as I was diagnosed staged and offered surgery in one meeting! Considering I had no clue I even had it it through me back. I asked her to give me a few months to digest everything but to please re-prescribe me the provera which she did and in that 3 months I have no pain or anything! After I seen her on the follow up I asked was being on provera long term an option over surgery she said yes so I’m just taking that for now and I am genuinely pain free. I’m not sure it will work for everyone but it just does for me and maybe worth a try?? I also take a high strength pro and prebiotic and that gets rid of all digestion problems I have so no more bloating after food or any time really! I am even managing to lose a bit of weight now. Maybe something to read up on. Xx
Thank you for sharing it's so kind of you. Unfortunately I've tried provera and it wasn't effective for me at all. My periods still came and it didn't help the pain. I tried it for 6 months after my first laparoscopy. I feel like I've come to the end of the road with medicines and hormonal treatments and feel really fed up with it all! So pleased you've found something that works for you. My endo was initially diagnosed as being on my cervix and it feels like I was having contractions, just horrendous!!
Oh gosh hun! Well what ever decision you make I hope it works out well!! It’s so sad having to go through life in pain! Hopefully you will get something sorted xxx
I am waiting for a date for my hysterectomy and have been on injections for over a year while I await a surgery date..... If they injections work I would push to keep having them, have they said why you cant have them for more than 6 months?I was told if the injections work than the hysterectomy should work. X
I was told the same that if they work the hysterectomy will so need to go on them again now I don't have a coil to be sure.
I don't know why but two consultants have now told me I can't be on the prostap injections for more than 6 months. Last time I was on it for a year but that was due to a delay in my appointment because of covid. They said the injection is not OK to be on its not about the HRT. They will not consider it long term.
This makes me feel I don't really have any other options other than the surgery as nothing else has worked long term!
You decided to go for the hysterectomy when though your injections work? Is that due to it not being a long term fix?
I actually asked for a total hysterectomy because I knew that was what I wanted. I am only 34 so my consultant had to put me on the injections to tick the boxes I think. And ive been on them for 16 months with hrt after the 3rd. I have had to try different hrts due to side effects but its settled now and I know the op will be a life saver... Hopefully in the same way Username12345678 said it was for them 😍
I think I'm where you are at if I'm honest I've had enough of it now! Thank you for your help. I hope you aren't waiting too much longer for your surgery x
I totally agree with what MamaofFurBabies has said. I was on the injections for a total of 2.5 years (2 separate time periods) I understood the risks and had an amazing consultant. The injections work for me, completely pain and period free for the duration. I took tibolone alongside. I had a total hysterectomy in Jan (at 45) and have continued to take the tibolone. Recovery is a long process, I'm only just starting to feel more like myself again but from the moment I woke up from the surgery I felt better. The pain I experienced from surgery and recovery is NOTHING like the endo/adeno pain. I haven't had any dramatic menopause symptoms, in fact I feel better than I did on there injections. My hair looks good, my nails less brittle, I'm much less moody (well I think I am!). I was also told if the injections work then the hysterectomy should have the same effect. I think its better. Best of luck in what ever you decide to do.
That's so reassuring to hear thank you so much for taking the time to share what you went through. I was prescribed tibolone as well and had no issues at all or side effects and felt so well again.
My main concern was weighing up the risks of being on it for several years. This is the only niggle I have I think. Definitely edging towards to surgery so I can feel human again!
Thanks for reaching out to this community. It's a brave thing to do and we're all here for you 😊 Contemplating hysterectomy is a life-changing decision and can feel really overwhelming. It's important to understand the facts and know what options are available to you. To aid the decision-making, Endometriosis UK have an Information Pack on Having a Hysterectomy which you can read here: endometriosis-uk.org/sites/...
I hope that this is helpful.
If you do ever feel that you'd like to discuss this with someone who understands what you're facing, there is also a helpline available which is run by volunteers who have endo. The rota is here: endometriosis-uk.org/helpline
As others have mentioned, a Hysterectomy is not a treatment or a cure for Endometriosis. A hysterectomy is a treatment for Adenomyosis. This could be worth discussing with your endometriosis specialist, the two conditions often occur together.
I hope you find treatment that works best for you. It is so hard, but we're all in it together.
I am under a gynaecology consultant within the NHS not an endometriosis specialist. I'm not sure there is such a person in my hospital. I have been told they can't find any active endometriosis as the coil is suppressing it. They can't offer me any other medical option as I've tried everything.
The prostap injection worked and i had no pain or periods when I was on it and this makes them believe the hysterectomy will work but I need to try it again to definitely say it will now my coil is out.
I'm confused by your comment that a hysterectomy is not a treatment based on what I'm being told but will ask more questions I guess.
Lol that’s my World right now , don’t go for hysterectomy you still young for that and side infect from it not worthy it , Im same age as you and l was offered it ? Read more about it and make the right decision , take your time .you writing my story there .
Sorry to hear you are going through the same and thank you for taking the time to share. I know I'm young but partly that's what makes me feel so miserable. I've lived with this for so long and tried everything that's been recommended or offered and I just feel like I can't do it any more. I want to enjoy my life now not when my girls are grown up and I've gone through the menopause.
They can't give me anything more from a medical point of view and they couldn't surgically remove anything during my laparoscopy so I feel like I've not really got much options if I don't want to keep going like this.
I had hysterectomy on the 1st June and it's been the best decision I ever made..I have got hrt patches really easy change them twice a week on the same day so mine friday and a monday..
So far so good.
So my husband tells me I'm beginning to get back to the happy bubbles self I was before..
Thank you so much for replying it is such a daunting thing to decide on and so final a thing to do. I really appreciate you sharing your experience and helping me decide. Just trying not to make a rash decision based on my pain!
I hope you are recovering well and you enjoy being yourself again 😊 x
Hi Louise,As you can see from reading others stories, a hysterectomy can help some women and not others. I had a hysterectomy at age 40 after over 20 years of daily pain and other symptoms. I had endo and adenomyosis. Like you, I had exhausted all other options and if anything helped it would only help for a short while. I was advised that Prostap should only be used for 6 months but that might be because I wasn’t given HRT with it. It affects bone density so isn’t good long-term. Anyway, I ended up having a hysterectomy and one ovary removed. They didn’t even check for endo, which I thought they would. I recovered from my op pretty quickly although some of my pain returned within a couple of months. This was dismissed as adhesions and they wouldn’t investigate further. The other issue was the zero aftercare and the lack of menopause and HRT knowledge amongst health professionals. Unfortunately they don’t receive mandatory training and this results in incorrect advice and dismissal of menopause symptoms (even from gynae consultants). None of them seem to understand the importance of female hormones for our body and brain to function well. I wasn’t offered HRT and even though I had one ovary I went into surgical menopause soon after my op. I was completely floored with horrendous symptoms - the worst were the psychological symptoms. Nobody told me that even when the uterus is removed and ovaries are kept we go into menopause within 5 years. This is because the blood supply to the ovaries is reduced, affecting their function and they can shut down. It certainly made me change my view on oestrogen and I realised how essential it is to feel well.
I suppose what I’m trying to say is that a hysterectomy doesn’t necessarily cure endo and can result in more problems. Also, a good consultant is essential and how do we know which ones are good and which ones aren’t? Usually after they’ve operated on us! If I was having a hysterectomy again I would ask for an endo specialist and make sure they were pro-HRT. I would thoroughly discuss and agree my HRT prior to the op so I could start it straight away. Another problem has been that the NHS can’t prescribe the higher dose of HRT that I need and some can’t prescribe testosterone (that’s a postcode lottery) so I’ve had to see a private specialist numerous times. Best wishes whatever you decide to do x
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