I am 43 and facing the next (hopefully last) stage in endometriosis life. I have had two laparoscopic surgeries and a successful few years on the mirena coil. After an unbearable few months it has been recommended that we induce early menopause to manage. The big question is Hormones vs hysterectomy. Anyone been here before? Please!
Hiya,
I was put on zoladex and the side effects were not nice. Great not having periods and endometriosis pain lowered a bit. But in the end I had to come off zoladex which was the right. I had rare side effects.
I had full hysterectomy 9 weeks ago in robotic theatre and im noe on hrt. I had had stage 4 endometriosis and was really struggling.
Now my I starting to get stronger and starting to feel like me again.
Hysterectomy I would choose over Zoladex. I had to try it first before my consultant offered me the hysterectomy.
Good luck my lovely.
Thank you so much, enormous appreciation and I wish you all the very best and here is to getting stronger and stronger! X
I’ve done both. Was on Prostap injections for approx 2.5 years which worked fine for me. I had some side effects but most stopped after I started taking hrt. I then had a hysterectomy last year (at 46). It’s not without its own challenges but my quality of life has vastly improved. Kind of wished I’d done it years ago! Feel free to DM me if you have specific questions. Good luck!
Should also add that I had endo and adeno and right now, hysterectomy is the only treatment for adeno
Thank you. ❤️ I hope you continue to improve and tyvm for DM offer x
Hi I have adenomyosis too and should be on for surgery soon, I'm sure it will improve my daily symptoms however, please can I ask you what the drawbacks have been, it sounds like you're still suffering? Thank you xx
Hi, if I’m honest, the main drawback is looking into the past with hindsight and realising what I was living with and how much it was taking out of my life! I’m 2 years post surgery now and feel 10 years younger! It’s the best thing I ever did. I still have a few aches here and there which I think is down to scar tissue. But I can live with that. The adeno was causing me to have constant back pain, nausea and very heavy flooding - all 3 a thing of the past 😀
Thank you so much, I am just going to have to go for it and hope, as you say, the day to day debilitating stuff stops. I'm so glad to hear all that is in the past for you now, Take care and bless you xx
hi, I am 5/6 months into having a chemical hysterectomy and actual hysterectomy is next month. The chemical one has been okay but only because I was waiting for the actual one. Side effects were horrid but helped with HRT patches. Period pain and periods still present but very light and very erratic. Other bowel and bladder issues still ongoing but better. However I would not recommend, I only found the process bearable while awaiting a hysterectomy. Take care x
What a journey! I hope the hysterectomy goes to plan and really helps. Very best of luck and thank you for the advise xx
Like others, I've had both. I would say first up that you need to fully understand what is being suggested. Hysterectomy is just removal of the uterus. It does not put you into menopause. For that you need removal of both ovaries (oophorectomy). This is then what they call surgical menopause and is far more difficult than natural menopause with some quite scary long term health implications. It is not something to rush into or to take lightly.
It really should only be done when absolutely everything else has been tried and there's no other alternative. You haven't said if you've been on zoladex/prostap etc (chemical menopause/gnrh analogues). If not, I would recommend going down this pathway first, partly because it will give you some idea of what surgical menopause is like and whether you can cope with it or not. It's not just got flushes and sleep disturbance, it can also put your mental health in the toilet.
I had the surgery at 39 - I also had excision of endo at the same time (this is really important). I have needed support with surgical Meno from a premature meno specialist ever since. Most GP's can't deal with it. Unfortunately, my endo returned after about 5 years (deep infiltrating in rectum and bowel).
The surgery did help me, but I was extremely unwell and in unmanageable pain, and it brings its own problems. It's a tough decision, but then it should be. Please ask lots of questions before you commit. x.
Hi MG!
They’ve proposed a series of injections and pills versus a uterus hysterectomy or oopherectomy (removing overuse and uterus)
So sounds very similar. They are looking to induce the menopause earlier to allow for some comfort. I’m done trying to conceive, mirena coil helped me over the last 3 years but has become useless now.
I am stage 4 endo and am pretty desperate.
Work is one of the hardest parts. I can’t do my job efficiently for days at a time due to the pain and now brain fog.
Scary long term implications? This was not mentioned in appointment! Can I ask what you mean please?
Thank you so much ❤️ so touched by this tiny but powerful community xx
I assume the injections and pills you're talking about are prostap or the equivalent plus tibolone (which is a type of non-hormonal HRT to help with the side effects of the prostap) but again you need to be really clear about what these things are. If your disease is severe then you should be at a specialist centre and not under any circumstances having this surgery with a general gynae.
Long term implications of surgical menopause: osteoporosis is the most talked about, but studies show this can be reduced with HRT post op plus diet/load bearing exercise to keep the bones strong.
There are then studies which show increased risk of heart disease, dementia and parkinson's. It's not clear to what extent HRT helps with this because there isn't enough research. HRT itself can be problematic, as there is an association between HRT and breast cancer (small, but it's there - you have to be careful about how your HRT is managed post op as generally the advice is that you only need oestrogen if you've had a hysterectomy, which doesn't seem to be linked to increased breast cancer risk, so some GP's will want to go that route, but if you have endo you need continuous progesterone to limit the risk of endo returning, and this combination is the one that does seem to be linked to breast cancer. Again, studies vary and different types of progesterone may have different risk profiles but the bottom line is that we don't really know). I would also say that HRT will not bring you to 'normal'. You will be and feel and look menopausal, the HRT makes it bearable, but you will feel different, so your skin/hair/breasts/weight/figure/cognitive function will change.
Thank you MadameGateaux. I really appreciate your knowledge. I am under kings college gynae, so very competent. I am not able to go privately, sadly.
I was warned about osteoporosis and the heart stuff. Terrifying. But knew nothing about the dementia and Parkinson’s threat. Incidentally my MIL had a hysterectomy and shortly after was diagnosed with early onset dementia so this has really made me stop to think.
Thanks again x
Hi, I'm unable to have a hysterectomy due to bowel endometriosis which has pulled everything so tight I could end up with a ruptured bowel. They want me on zoladex but I'm 50 so I'm trying continuous HRT first with provera and estrogen gel. I would opt for a hysterectomy over zoladex but from everything I've read try to keep your ovaries if you can. Good luck 👍
Hey I too have severe deep infiltrated endometriosis in my bowel have had awful bowel symptoms the past three but it just gets worse and worse and just bleed every time I open my bowels and the pain is horrendous. Have just had an mri last week that was an awful experience as have got probably autism and I felt so closed in and I got more and more anxious and stressed the longer it went on. Why am replying to you is am 37 no children or anything but have begged my consultant for a partial or full hysterectomy. He said have to have my bowel surgery first as doing both together you are at a greater risk of infection. He said he will to cut away the endo on my bowel and then remove bits and then join it back together. I had a colonoscopy last year as my dr thought I had inflammatory bowel disease which I didn’t have. Just have inflammation on the outside instead. Am trying to keep my job going but at times I struggle especially when I’m
Always in the bathroom no matter what I eat. So surgery for me is the way forward. Was told I have endo wrapped around my nerves in my pelvis. A frozen pelvis alot of bowel envolment which is deep. Just looking for a little advise really on what foods you would call safe to eat which doesn’t effect the bowels . I had a large endommetrioma removed as well . Good luck on your recovery ❤️🩹 x
That sounds really tough. I think at 37 surgery is the answer. I have read two good books on food and endometriosis and they all say the same thing: no sugar or alcohol, no processed junk and absolutely no gluten or processed flour. I am much better without wheat and sugar. Plenty of water and plenty of walking! Walking is key. I also drink a lot of green tea and peppermint tea. Some people give up dairy but I haven't and same with coffee. I can tolerate that. Hope that helps x
Thank you I don’t drink alcohol so that’s ok I don’t have bread but I do have cola I tried to stop drinking it and sugary sweets but with the Asperger’s it’s like I need the caffeine boast. Don’t drink coffee very much at all and I do drink a lot of peppermint tea. I will try the other pointers . I try to walk around but a lot of the time with the endo wrapped round the siactic nerve I struggle with walking . I’m hoping to start swimming with a friend from work as I want to loose weight. But my weight issues I think are due to the psychiatric medication I take. I do have the mirena coil. But have started getting severe pain and cramping like I’m going to bleed . But just have like a break through bleed
I also find it hard to regulate my body temperature as well I think to be honest am either starting to go through the change like perimenopause as I get down still even though I’m on uppers . I started my periods early at 10 so this is quite possible but I don’t really want go to the drs again and tell them I think am starting to go through the early change . I have gotten down as one of my bunny rabbits died and I think as I didn’t grieve my gran properly nearly three years ago it has like opened up Pandora s box. Had my mri and will have a letter soon explaining the surgery im betting next in full detail .
I'm 46 and diagnosed with stage 4 endo deep infiltrating bowel and some huge cysts on ovaries and fallopian tubes and a fibroid in June following ultrasound and mri. I have been put on monthly prostep whilst I await the specialist team in October. I have had hot flushes, some insomnia and weight gain but I have massively reduced my painkillers and am no longer constantly bleeding. It's the best I've felt in years. I've got my appointment with the specialist in October and suspect I will have to go down the full hysterectomy route. Wishing you all the best
All the very best of luck to you. Thank you for your reply x
I'm in exactly the same position! We decided to go down the route of Zoladex first to see if that is effective instead of going for a hysterectomy. I've had one injection and reacted really badly to it. I now need to make the decision whether to continue as I am for now and heavily pain manage or bite the bullet and go for open surgery hysterectomy.
Hi, I’m 52 and 9 months post hysterectomy and oopherectomy. I had been on Zoladex and then Prosap due to endo on the ovaries and fallopian tubes plus adenomyosis in the uterus.For me Prosap controlled most of the pain but not the excessive bleeding.The side effects from the chemical menopause made me feel pretty ill /depressed / anxious and having the hysterectomy then using HRT has been much easier. So from my perspective the hysterectomy was the best option. Best of luck 
Advised to have hysterectomy (stage 4 DIE endo) had hormone treatment instead? 
Should I have a hysterectomy when I cannot take ANY hormone pills.
Hysterectomy 
Hysterectomy 
