Endometriosis UK
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I’m new - just started zoladex injections before hysterectomy. Looking for advice

Hi, I was diagnosed with Endometriosis in 2014 after losing my son and a hemorrhage after contracting an infection due to some of the placenta not being removed. I’ve always had severe pain period pain since I was 10 years old when I first started them. I spent most of the rest of my primary school years in bed with an electric blanket. Eventually the doctors gave me a tablet which regulated my periods to once a month (I was having them twice) I was still in a lot of pain but it did reduce. Eventually I ended up on the pill as the medication stopped working. I’ve also got a tilted womb and small fibroids so think these might be adding to my pain. I’ve had a lap and then on cerazette for over 3 years, I’ve put on 3 stone due to the pill and my moods we’re terrible I was angry all the time. I’ve came off it and my consultant wants to do a full hysterectomy. I had my first zoladex injection of Friday and I’m now on Tribolobe. So far no major side effects just severe tummy pain. I’ve got a daughter who’s 7 and I’m 38 y/o however I’m still not comfortable with the hysterectomy yet. Will see how I am on the injections and HRT. Has anyone else been on the zoladex? How were you? Did you have a hysterectomy and how were you afterwards? My main fear is being moody and you can’t just stop the pill this time as it’s final

Thanks

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I had a hysterectomy + excision of endo last year at 39. It has been a bumpy ride and it is a difficult surgery and a tough recovery. However I had reached a point where my pain had become unmanageable and I had run out of options - I was diagnosed very late and the disease was extensive (bladder, bowel, ligaments, pelvic sidewall, ureter). None of the drug treatments worked (including prostap) and I had pain and bleeding with all of them. From a pain relief perspective, the surgery has worked. However as I also had my ovaries removed I am now dealing with premature menopause and this is tough.

They should only be removing your uterus if you have adenomyosis. You will also need excision of all endometriosis tissue at the same time, and if they are suggesting removing your ovaries, they need to justify this. I would also recommend getting a second opinion and being seen at a bsge accredited centre if you aren't already.

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Thank you. My pain is severe all the time. It’s really affecting my whole life, I can’t do things with my daughter and feel it’s now impacting her. The only other suggestion is another laparoscopy to investigate further and remove what they find then the Mirena Coil. As this is the same medication as the cerazette only administered differently my doctor agrees it will be the same as I’ve done for the last 3 years. I suppose I need to see if these injections help first as if they don’t then the hysterectomy won’t work my consultant says so at least I can rule it out and move onto another treatment.

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I know they say if zolodex fails then a hysterectomy won't work, but that's actually not true. I had 2 courses - 5 months of decapeptyl with HRT addback (still had periods, abandoned after a massive pain flare landed me in A&E) and 3 months of prostap without HRT (bleeding stopped but I still had pain) and the hysterectomy has helped. I seriously would recommend getting a second opinion from a bsge accredited surgeon. If they are saying that there are options other than the hysterectomy then they shouldn't be suggesting a hysterectomy at all because it should be an absolutely last resort when everything else has failed.

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I’ve just had my 5th zoladex injection as I’m having a hysterectomy and BSO on 9th March, I was also on tibilone and didn’t really get any symptoms but since having this 5th injection I’ve had constant pelvic pain as if I’m going to have a period, I too have ran out of options therefore a hysterectomy is my last resort x

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Thanks, it’s so hard that this is the only option isn’t it. Hope you feel better soon.

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I did 5 months of a 6 months course of zoladex with no hrt as I felt it silly to get rid of my natural hormones to then replace with synthetic ones wish I hadn't was crap and as a result when the gp offered another round for the pain I said no,the good news is your body does come back from it it took me about 18 months to 2 years to get back to "normal" but things are now as if I hadn't hade it at all,my gyne prescribed it to assess if I had endo as I did not fit typical symptoms and did not want op just to check ( I have really light but horrendous periods the only not typical symptom, I have every thing else is there pain at ovulation,pain during sex ,awful periods, assocated pain from knees to ribs,low immune the list goes on and on)back to the zoladex for me I was just about totally body pain free from 3month but mental health suffered badly,i was due the op about 2 years ago now to "get rid of the endo and tidy up any mess" but I had a chest infection and was refused surgery which I was glad of as when I sat with the surgeon before hand signing consent forms she very flippant said to sign for a full hysto if they needed to "whip it out "then they could as they don't know the damage till they open me up and it was best to cover the bases,all of this as a day paitant at local hospital I have not been back.im pleased I had the zoladex as it proved there was something wrong with me and I could finally give it a name.

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