Zoladex or full hysterectomy

[NatalieGR]

I have been suffering with endometriosis for over 10 Years but over the past two years I have been experiencing blood in my urine. My last surgery until recently was in August 2016, and my gynaecologist removed more endometriosis but diagnosed me with microscopic endometriosis of the bladder. I have tried taking back to back combined pills and the blood would still come. I reluctantly started zoladex injections in October 2017 and started tibolone in December 2017. In March I felt that I was going to explode and felt like I couldn’t go as I’ve been feeling so low, anxious and stressed. I’m divorced mother of 6 year girl and have a rather full on stressful job in IT. No one at work to speak to and I have been feeling mor isolated and alone. I’ve been off work since this time and I feel like a failure as I’ve never had any time off like this before. In April I wanted to not have another injection and my gynaecologist thought that it was worth trying. Within a week I had a whole weekend of blood (like a full period) in my urine. Within a few days I went for another injection. I have seen my gynaecologist again and we’ve discussed a full hysterectomy which is booked in next month. To make things more xo,plexus I am hypetmobile and suffer with back pain and sciatica. I feel that this has become unbearable and not sure if it’s connected to zoladex but I’m now on naproxen which has helped enormously. Last week I decided to get a second opinion and went to see an amazing female gynaecologist in Oxford. I had a laparoscopy and cystoscopy last weekend and she has also confimed that I have cellular endometriosis of the bladder. I have possibly years before my natural menopause so I can continue with zoladex and HRT or go for the hysterectomy. I’m confused and wanted to connect with others who have some appreciation of what I’ve been going through. Endometriosis has been part of my adult life for years and if it wasn’t for the surgery I had in January 2011 I wouldn’t have my daughter. It’s been removed in almost all places but I can’t believe that it’s in my bladder. I’m scared that it will all get removed and I’ll still be having the same issues which is quite unlighly providing I take the right medication (HRT) afterwards.

[Starry]

Huge hugs, so sorry you are struggling and what a big decision to have to make. I related as i really struggled with the effects my illnessss have had on my career

Firstly dont feel guilty in the slightest, about time off work, life just throws stuff at all of us at some time or another and no one at work will be anything except concerned about how you are.

My endo was on rather than in the bladder and i had a deep rectovaginal nodule type not microscopic so it might behave differently. But I was told by my (bsge) gynae that zoladex was a good indicator whether an oopherectomy (ie removing oestrogen production) would help, so it seems odd that you then bled more after your ovaries shut down. I would also ask if cellular endo can make its own oestrogen or use non ovarian sources of oestrogen. (Large nodules like mine can but cellular hopefully may not be able to). Perhaps that is something you can ask your consultant? Ultimately I would want to know their estimate of the percentage odds of it helping and how many cases they'd treated before to decide what to do. Hysterectomy itself should remove any uterine endo and associated symptoms but obviously your bladder endo will still be there.

Take your time, its a big irrevocable decision, read up on bladder and cellular endo papers, and talk to ladies who've been through it so you are settled in your mind about the trade offs being worth it.

I was terried of risky bowel surgery so held off on my treatment for 6 months to try everything else first, by which time I'd no regrets as my bowel was at risk and I was utterly unable to work. It has meant that even though in my case the outcome was was only partly successful and i developed complications, I still have peace of mind and know I made the right decision for me looking back and had no other choice.

Good luck in whatever you decide. It will be the right decision for you and the best one you can make with the information you have when you come to make it xxxx

[NatalieGR in reply to Starry]

Thank you. I’m going to try to speak to my gynaecologist tomorrow xx