I am waiting for excision surgery and a hysterectomy, with possible bowel surgery. I was happy with the decision, until I had zoladex. The add on hrt, caused my migraines to be more frequent, so I stopped it. Obviously I had all the usual side affects, but I also became suicidal. I’ve suffered with depression over the years and was taking antidepressants already.
Thankfully I’m feeling much better mood wise, now the zoladex is out of my system, but I’m so scared of what a hysterectomy is going to do to me. Apparently oestrogen patches are better tolerated if you suffer with migraines, does anyone have experience of this?
TIA x
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CeCeT
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I’m not sure this’ll help as I was 51 when I had the hysterectomy.
I didn’t react well to Zoladex, sent hormones even screwier and put up BP. Since hysterectomy the hormones have settled and found I don’t need HRT. People react differently so it’s unfortunately going to be hard to tell.
Did they say why you need a hysterectomy? It’s not a guarantee to stop Endo
Thank you for replying, I’m glad you have been ok after the hysterectomy.
He just said we will excise the endo, and do a hysterectomy, does that sound ok., so I said yes. I know it’s not a cure, but felt it was my best chance , as have tried everything else.
For me I’d ask why they are suggesting a hysterectomy, I was desperate for one before I had it done and asked for it. My uterus was enlarged. I just like to know as much info as I can.
That’s the trouble with Endo we try everything we possibly can and some 🙄
Hiya, I had to stop zoladex for the same reasons. I also got a kidney stone that stuck and I had it removed in theatre. It was a rare side effect.
I'm now a year on from a full hysterectomy and its the best thing I had done. I was home after 2.5 hours. I was lucky to have had the hysterectomy in a robotic theatre. The recovery was so much quicker, I was back at work 8 weeks later.
I'm on HRT and I still get migraines but I have suffered with those since I was 20, I'm now 55.
Do what feels right, yes I still get pain because of the internal damage, I had stage 4 endometriosis it was everything, organs stuck including bowel.
HiI'm 41 and was diagnosed 3 years ago. I am currently waiting on excision surgery, possible bowel surgery and I want a hysterectomy, but my surgeon is reluctant. I have deep endometriosis, which is growing into my bowel and over my bladder, and Adenomyosis.
I was put on prostab, similar to zoladex, the prostab has been helpful with pain management, but the hrt has caused similar issues to you. I am highly sensitive to synthetic hormones.The tibilone caused me to be suicidal and ranty, then I tried everol patches. These made me feel good, but counteracted the prostab, so I started bleeding again and was in agony. I've had the gel and tablet, but again this made me bleed heavily and my pain returned. I've since stopped taking the hrt, but the GP and consultant are insisting I take it for my bones.
Obviously you have to do what is right for you. The patches for me were the best hrt I've tried, but because I still have my womb it's not worked for me.
Has your surgeon suggested an ablation? Obviously they don’t work for everyone but it maybe a route to try if you don’t want to go the hysterectomy route if that is an option for you.
I used to suffer from terrible migraines every month where I was so bad I couldn’t even get myself to bed. I’d have to be almost carried up to bed. It could last 24hrs-3 days, sometimes twice a week. Once there I couldn’t even get out of bed to bed sick, just hang out of bed, I was so ill. I feel your pain! I’ve had zoladex and Prostap injections with add back hrt. Firstly with livial tablets then evorel patches. I had hysterectomy last oct after bleeding for 7 months continuously. I’ve been on evorel for 2 years now got another 5 to go. No migraines, occasional headache, but that’s due to anaemia from having a colostomy, very very few hot flushes, all in all the patches work fine and are safer than the tablets my consultant said. Good luck.
I have had ocular migraines for years up until recently. They were brutal and triggered by the sun strobing. The private GP I saw knew my history (along with a load more gynaecology issues) and I’m on continuous combined HRT, oestrogen patches plus progesterone tablets. Haven’t had a migraine for over three years so I’m not too worried.
I can fully relate to you I had a full hysterectomy at 39, 6 months ago and it was by far the best decision I ever did.
I was only prostap for 18 months and then had allergic reaction to it, belly was covered in hives and worse still because it’s in your system for 3 months I was told I could get worse any time so needed a pen incase the allergy progressed, they then changed me to Zoladex and by this point I could see how much rubbish I was putting into my body and the effects it was having on me and my body and mind.
It was me that pushed and pushed for hysterectomy and my consultant was unsure however she did agree and I was placed on a 3 year waiting list, I then got a phone call from another surgeon who offered to do it much sooner, I agreed and to be honest he was sent from above!!
On the morning of my surgery he came and asked if I was 100% sure to remove everything as I’d go into full menopause and Im only 39 I explained me and my ovaries haven’t gotten on for a long time and it was time for them to go with the womb.
I can honestly say everything from the operation to the recovery has been fine however I started bleeding after 16 days so they wanted to check I was healing inside properly and was given a emergency scan and appointment with on call dr who I had never met she told me I was wrong hrt I could just go on the gel as I didn’t need the two hormones anymore as I don’t have a womb. I was fine with this except the gel caused breast pain, I saw him few weeks ago and he was so annoyed, he told me that even if I had changed my mind he would of removed the ovaries as I was riddled and it was on my bowel and bladder and although he had removed it all he needed me on both hrt as protection against the cells left turning to cancer, so I have started taking the tablet as well as the gel!
I also suffer with migraines I have aura migraine I’ve lost my sight for 2 hours because of a migraine etc and I do know hormones play a BIG part in them but since the op I have had 3 at most and they don’t last anywhere near as long plus I don’t think it’s from the hrt, I now suffer with fibromyalgia and I get bad neck and back pain so I now think that’s the cause.
Talk to your consultant if u feel u can explain your concerns and do what’s right for you. I just thought I’d I go into a menopause due to surgery that’s one less nasty drug in my system forcing my body to do it, yes my mood as been down sometimes worse than others but it’s been a terrible year with other things however due to no pain at all and feeling I finally won the argument between me and my womb I’m in a better place I just focus on my goal and accept I’ll get days where my mood is low and I feel down more than usual but tomorrow will be brighter and I’m strong enough to get through it, we are warriors and we fight everyday to feel normal.
Thank you for your reply, definitely sounds like the right decision for you. Proves medical professionals are not on the same page, glad you on track now.
Firstly myself with migraines on and off through life since 12yrs. Yes the Zoladex a wonderful drug it takes a yr + to get used to it but after many yrs of it caused a deep depression cos of the deep menopause. I feel also the general stress in my life with a divorce made the suicidal thoughts perhaps? Zoladex cos of my 10yr used took 2yrs to get over stopping it. I went through long conversations with Endo Specialist over Hysterectomy the fact that wide spread Endo doesn't go away after it. That there can be damage caused to other organs including bladder and bowel. That sometimes the sling they put in to hold other organs in place comes apart so 2nd operation maybe necessary, general nerve damage which can cause future pain. As to hormone replacement myself I didn't do well in the past with the Pill or the IVF with migraines, my family history of cancers, ageing and lifespan reduced by a Hysterectomy which I was surprised about.I still take Venlafaxine for depression for PTSD caused by Endo, career lose, a divorce where my inheritance went but managed over the years to reduce to a low dose.
With Endometriosis we are pushed to the limits generally. We are soldiers but at somepoint it's too much. I understand your thoughts too well.
There isn't a fix, just a change of issues whatsoever you decide on but you are young to consider Hysterectomy. 2 male friends I know both left their wives after Hysterectomy due they said the change in their wives general behaviour and not wanting sex again they were about 42yrs.
I’m also 38 with 2 children and have been offered a hysterectomy.
I refused prostap injections as they made my life hell so waiting to see an alternative gynaecologist as mine wouldn’t do the surgery without 6 months on it first.
I need a totally hysterectomy due to oversized uterus that is attached to my bowel and ovaries also stuck with scar tissue.
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