Hi, I've been on Zoladex exactly 12 months. It hasn't been straightforward as I'm on it for hemorrhaging and fibroids. My previous consultant tried to do a hysterectomy in September 2023 and found endometriosis had fused my bowel to my cervix and ovaries so abandoned it and I went on Provera. I had 4 months of hell on Provera, and then went onto Zoladex which has changed my life. Getting the timings of the injection right has been a challenge because when it runs out I bleed so much that I end up in A&E. Around May it really settled, and if I get it every 60 days I'm generally good. My mood is MUCH better on Zoladex. I bleed every month but I'm not hemorrhaging. I'm 52 next year so they want me to go through menopause. I had an MRI and zoladex has shrunk everything. The fibroids are smaller and even my cervix is smaller. The endometriosis plaque is smaller and I've no "active endo". I hear these words a lot. I know endometriosis never disappears but mine is grey and "old" according to 3 consultants now. My new consultant is an endometriosis specialist and is very pleased but she's offered me a hysterectomy. She'd rather not do it as zoladex is working but she said it's an option. I can stay on zoladex for another year or I can put my name on the list for the operation. She said I'd be a good candidate as I've responded well to zoladex. I had thought my situation was inoperable so I'm blown away by this new development, and just wanted to ask people's advice and experience. Has anyone had a hysterectomy rather than stay on zoladex at 51? How did you get on? The consultant said that if i come off zoladex and use HRT then I will probably always bleed ( I am on a low dose of estrogen and a higher dose of progesterone- utrogestan. I refused Tibilone because of my experience with Provera progestin). I do want to be able to take HRT as I think its important if you get the balance right. Thanks everyone x
Hysterectomy or not???: Hi, I've been on... - Endometriosis UK
Hysterectomy or not???
I am now 51 and at 50 I asked on this forum the same question as you. Your gut will guide you, but I went for the surgery (radical hysterectomy) and though I’ve had many complications, I’m now coming out the other end. I’m on my last day of a two week holiday in the sunshine- I cannot use words to explain how wonderful it is not to be constantly scared of bleeding, needing bed rest or whether I have packed enough pain relief!
This year has been the hardest of my life and I’m totally looking forward to 2025.
Good luck with your decision 🍀
Thank you for this; enjoy your holiday. 2024 was very tough. I guess I'm worried about "inviting trouble" as my consultant says but I can't stay on zoladex forever x
The question I asked myself was ‘could I cope without intervention?’
For me, my quality of life was poor and I felt that even if I had a slow recovery I hoped that eventually I’d be pain free. It’s now 3 months since my first surgery and 11 weeks since my vaginal vault repair. I’ve been pain free since the first op - long may it last…
Best wishes 🌺
Ive made the best decision to do hysterectomy..I’ve been on zoladex before and it helps temporarily. I decided to do hysterectomy because no point taking if the pain come again after gynea off the zoladex ..
I wasn’t on zoladex but had prostap injections instead which did help but you can only have for a limited time. I had endo on bowel & other adhesions too & had full hysterectomy & removal of ovaries 5 weeks ago at the age of 51. I can honestly say that I feel better than I have done for years. Only you can make the decision but I wanted a “fix” rather than medication to keep it at bay. Good luck x
Thanks for this. I had zoladex injection almost 2 weeks ago and I'm sat here with a full period this morning thinking this is just stupid. I think because I've stopped hemorrhaging I'm so relieved but I'm still bleeding most days. I'm just a bit worried about complications but I think if they can do it, I'd be mad not to accept the offer.
I'm on prostrap and was told i can stay on it as long as I want to 😊
Hi,
I was on both prostrap initially and then zoladex injections for 3 years. In the UK this drug is only licenced to be used for 6 months. Although gynaecologists push you to stay on it longer, it can and does affect your bone density. Have you had that monitored via a DEXA scan?
I had very severe endometriosis (stage 4 frozen pelvis fibroids, polcystic ovaries, and adenomyosis), but I did eventually find a surgeon who who was willing operate. This type of surgery should only be done via accredited BSGE centres where there are multidisciplinary teams present, e.g, urologist, colorectal, and gynaecologists who specialise in endometriosis. So I'm hoping you are under the right care.
I'm 43. I had a full hysterectomy. They only managed to keep 1 ovary. Everything else had to be removed. Due to the complex nature, it took just over 6 hours.
I'm glad I had it done as my quality of life has improved vastly, especially with bleeding . They give you a fit note for 6-8 weeks. Just bear in mind that your recovery could be a lot longer as you are not just having a straight forward hysterectomy
They will be excising your endometriosis too. It took me 4 months before I was able to go back to normal I.e work and household chores etc...
Wish you all the best.
Thanks for this and what a journey you've had. Yes, they are all fully trained and accredited. The waiting list is around 9 months according to the specialist (which i thought was really good considering the state of women's health at present). It's getting the injection too that's proving difficult. My GP nurse is very difficult about it due to me being on it "off license" so at present I have to travel 90 minutes every 60 days for it. The last one I had was faulty too and the safety guard wouldn't close properly so I had to lie there with the thing in me whilst she jiggled it about. I think I just want it all gone and to not have to worry about it all so much. It's running my life at the moment x
I know the battles. It took me 3 years to be listed for surgery and then I had a agonising 79 weeks wait for surgery. I did do some private therapy as well to help with pain management. I saw a private psychologist, cupping helped too. Massage and I went to a private physio who helped relieve the tightness in my muscles. Acupuncture didn't help me but it did help others. Hope you are not waiting too long. X
Hi, I was in a very similar situation 2 years ago aged 52. I had almost constant bleeding, caused by by fibroids, adeno and endo. I tried Zoladex, and Prostrap which helped but were a bit hit-and-miss with me. I had been in and out of A&E with haemorrhaging I was taking all sorts of pain medication and felt like I was living a nightmare. I had a total hysterectomy and even though I didn't have keyhole, I don't regret it one bit. For me, there were no complications, although the recovery was longer than I expected. I went straight on a low dose hrt patch after the surgery so didn't have any problematic menopause symptoms. The waiting list for a hysterectomy in my area was so long. I had about 8 months on the list and two ops cancelled and was completely stressed out, in the end, I scraped together the money and had it done privately. Good luck with you're decision.x
I came off of my Zoladex 2 years ago and I was started on HRT and I bled for 4 months continuously. I was restarted on Zoladex with tibolone for 6 months with an attemp to co.e off again, this time I stayed on Tibolone and I have been great. I have pre menstrual symptoms but no bleeding. Hope you find a solution Angela x
Some women really tolerate progestin well and thrive on it. I wish I did. So glad it works for you x
Hi I'm on prostrap i refused a hysterectomy far too many side effects or complications for my liking. Glad the zoladex is working well for you x
You've always said this 🌈 Rainbow. What puts you off?
Hi the risk of various cancers, heart disease, parkinsons, prolapse bladder, increased mental health issues, bowel and bladder issues, increased risk of so many things.
Sorry to hear this. Myself in a similar situation most of the years with Endo. My Endo is everywhere even in my lungs in my 30's but Zoladex stopped it there. My Endo started at 10yrs but only discovered at 26yrs. My whole trunk has suffered. A life saving Operation at 26yrs as bowel twisted but the disease was on all organs and my interior distorted. Womb on the spine, right ovary across the bowel, left ovary disconnected almost in the groin. The left ovary was in good condition but the right was werid. I had private operation by Mr Tom Lewis whose since died but a leading Specialist. It was a long operation everything was moved and left ovary rejoined. I tried IVF at 39yrs with my 2nd partner.
The thing is with Endo most people who have it on areas like the bowel it is unlikely to go with a Hysterectomy. Once the disease has set up areas outside it appears to continue cause damage. After menopause Endometriosis is slower. My menopause was at 56yrs. I still have pain not as serious as til the age of 47. The Zoladex was a great drug though not perfect but also nerve damage caused many Keyhole operations with adhesions and scarring and different types of cysts. I am totally bedded down, the Pouch of Douglas is finally softening.
I have been offered Hysterectomy by Gynae's who are not in the full picture of the other organs in my body. The specialist who has done most of my Keyhole Ops at the Endo Clinic advised that during the Hysterectomy there could be issues with my bladder/ bowel. I could possibly lose them at worst or have bladder/ Incontinence, I probably would have nerve pain and the Endo would still be there and in my case still growing.
I also was told by another specialist that losing my Ovaries without addback hormones would age me quicker, slightly shorten my life. Well cancer runs in my family, the addback would stimulate the Endo so I feel a Hysto is a no go as it would bring a lot of new negative issues. During my late menopause at 56yrs I used Morphine on and off to get me through.
Since menopause I started to enjoy sex much more. I still take painkillers but not every hr of day or all day.
I look great, I look younger. I have had to adopt a gluten and Lactose free diet because of the stomach and bowel issues which started in my 40's.
I wish you the best.
x
I'm currently in same situation. I'm struggling with symptoms due to being on Decapeptyl. I've just had an endo flare up ( 10 days) despite being on the injections. So I'm not sure if that's normal. I think it starts to wear off after 2-3 weeks. I m currently having it every 28 days. Anyhow, I'm on the list for a hysterectomy. Consultant put me on the list whilst I was deciding due to length of list.
I've had three weeks off work in total this year due to endo which I've never had to do before. I'm 47. I can't use any form of HRT even on Decapeptyl as it flares up the endo. I'm hoping that a hysterectomy/ removal of endometriosis and then starting HRT might make me feel a lot better!! I'm nervous though!
They said I could remain on the injections for 3 years until 50 but vaginal dryness is a bugger! I've now found a moisturizer that works but I'm not sure I want that long-term ( obviously HRT will help).
Hope you make the right decision for you x
I tried hormones during Zoladex as addback but made me feel ill. During my many yrs of Zoladex I found it was always running out early. During the years of this implant my Estrogen levels were checked but higher Estrogen levels were greater than expected while on the drug. This also happened during IVF where my Estrogen levels were extremes. It was believed my body was trying to overwrite with extra Estrogen created in another gland in my head called the Pineal Gland. My family in my mother's side have endocrine cancers, breast and Thyroid. More girls born all look younger than their age. The ones that get through the cancer years live longer and still look younger.
Yeah the women in my family all look ridiculously young in their 70s but many of us get Alzheimers x
Hello, slightly similar situation, I bled for years, tried norothisterone which was not good for me. Had a failed hysterectomy as bowl fused to uterus. So I went on prostap, similar to zoladex, they offered me to stay on it for 10 years. I decided to go across to the UK and get a hysterectomy which was successful, they unfused my bowel from my uterus. I came off prostap prior to the hysterectomy and all is good. Pathology diagnosed fibroids and adenomyosis which is what caused all my bleeding. I was worried if I stayed on prostap for 10 years, what the side effects would be and if and when I stopped it, I would have bled again I fear. I was 42 when I had my hysterectomy and not looked back. Hope this helps. To mention, they said there was a 50% chance of a stoma, which I prepared myself for but my surgeon was amazing and I didn't need a stoma.
Thank you for such a positive story. So glad it worked well for you x
Hi, I wanted to continue on Zoladex because I'd just gone through a divorce with a serious depression but the the the HSA wouldn't pay, I couldn't afford to extend the drug cos of its cost. I feel now that they were right to withdraw it.
Well I was on Zoladex 15yrs+. Yes there was a difficult transition of withdrawal coming off it at 54yrs thats when I had to use Morphine sometimes as the body was waking up. There also was a difficult issues with a bad late menopause, alsorts of feelings, brain fog, cognitive, mood swings a bit like pre-period, general fatigue, aching in limbs and hotflushes and night sweats. The depression turned into PTSD caused by my divorce as I still don't know why it happened as there was no lead to its reason he never answered my questions. He did well during the divorce taking up golf and flying lessons. He got my inheritance money as a pay off.
Nuts isn't it still love him.
Sending love ❤️ you are a survivor x
Norethisterone after a hysterectomy 
Hysterectomy or not?
Hysterectomy or Not
