Zoladex for Endometriosis

[EndoBattle]

Hi I’m new to this site. I was diagnosed with Endometriosis 2004. But have obviously had it for a lot longer. Had a laparoscopy surgery February 2017 to separate organs that had stuck together Bladder, Bowel, Ovary, Stomach etc and to have a mirena coil fitted. Pain came back with Vengeance August 2018 I’m due to get my fith Zoladex Injection on Thursday and I’m seeing specialist/Surgeon tomorrow to discuss next step. Hopefully a hysterectomy. Any advice would be appreciated

[leebum28]

I'm on my 2nd injection of the 2nd round of Zoladex. You didn't mention your age or if you have finished having children.

I was in the same position you are. I went to see consultant after the first round of Zoladex and told him how for 6 months i had no pain and i felt a lot more me. and despite my age (i'm 30) i want a hysterectomy. I have a child and 2 step children. He agreed and said he would put me on the waiting list for a full hysterectomy if i went to see my GP and she would write a letter of support.

I would go into your appt armed and ready for anything they may say. Obvs be polite but firm when you say this is what i want, now we have exhausted all avenues. I really hope you get what you want, if for whatever reason you dont....ask for a second opinion with a different specialist.

I hope it goes well for you. x

[EndoBattle in reply to leebum28]

Hi Leebum28

Thanks for replying. I’m

48 and can’t have children. My specialist has agreed to surgery. He’s put me through as urgent do I should have it done 6-8 weeks from now. He’s going to leave my cervix for support but take everything else away. When I had my first surgery so many areas were attached and it feels like my bowel is attached again. Won’t know until he opens me up. He was very reluctant to do a hysterectomy before the age of 55 due to all the long term effects it can cause. Have they tried you on HRT to see if you can tolerate it?

[leebum28 in reply to EndoBattle]

Are you happy with what they have done?

I am on zoladex injections until my surgery (approx 6 months waiting list) which is like a chemical menopause so they can sort HRT before it happens. Currently the one i have been on for 2-3 month time now has been working. no hot flushes, perhaps a little irritable, but no endo pain etc so i am optimistic that hysterectomy is the right way to go for me. I am nervy about the side effects, in particular the bone density and breast cancer association with HRT but the surgery and process i am more than ready for

I had adhesion around bowel, bladder and ovaries. I also get external endo in my vulva so had half of my vulva removed last time too. very rare apparently. My specialist had never seen it before and he has been a gynae for 40 years.

Hey ho, nice to be different! haha

[leebum28 in reply to leebum28]

I should probably add, i also have PCOS and fibroids, and have had to have loop treatment on my cervix twice. If theres anything wrong with me it is almost ALWAYS gynae related, i think this has helped the cause for a hysterectomy.

[EndoBattle in reply to leebum28]

Hey Leebum,

The bone density and cancer gets reduced if you are on HRT. The way I read your message it sounds like you think it increases the chances. Have I read that right. My specialist wouldn’t do the hysterectomy unless I could tolerate HRT to reduce the chance of this happening

[Moonglo]

Hallo, just a word of caution that a hysterectomy is not a cure, although it’s known to help some people. Removing your reproductive organs may not help with your symptoms. Please research this very carefully to make sure this is what *you* really want, and not what’s being pushed on you.

[Purple500 in reply to Moonglo]

I am new to this, but have had relatives who have refused to have a Hysterectomy believing that it will not resolve their problems. For some women it is not an option, especially those with other underlying health problems. However, every person is different and in some cases it is better to seek a second opinion, rather than rush into something that you might regret later.

[Dangermouse381]

I have had endo for 20 plus years but only diagnosed at the age of 40! I had it everywhere. Also adenomyosis and 6 weeks after my 1st excision surgery, I had a total hysterectomy.

Dispute not having ovaries, my endo has returned on bowel and bladder and I'm due more excision surgery in Feb.

Hysterectomy isn't always the answer. It hasn't helped me! I had to go private in the end as messed around in those 20 years so much, fobbed off, wasted surgery with general gynae who found nothing. I would find a good bsge centre and ask for excision surgery.

[Dangermouse381]

Sorry, should add. The hysterectomy was solely because I had adenomyosis, not endo

[EndoBattle in reply to Dangermouse381]

Hi your message has left me a little worried as I have endometriosis everywhere. I was at the specialist yesterday and he is going ahead with a hysterectomy. I really hope this is the answer for me. Chronic pain has really affected me mentally

[Dangermouse381]

I'm so sorry I didn't mean to worry you. It affected me mentally also. Are you at a BSGE centre?