Should I go on Prostap/Zoladex?!

[Louisehart1995]

Hi,

A very complex question, I know, but one that’s been eating me up since I had my surgery 3 months ago.

I had a large endometrioma which sadly (likely due to how long I was waiting) had leaked so I have more areas on endo around my insides now. The surgeon said this was quiet bad and wants to put me on GnRH injections. Now my symptoms aren’t too bad (I started the mini pill a few months ago) and I’m lucky that at the moment they are fairly manageable so I don’t feel like I need intervention for pain relief. I have only heard bad (& awful things!) about the injections but I fear I will be backed into a corner if I don’t follow the consultants advice. Whilst the surgery wasn’t easy I would rather have surgery again (which he suggested would be needed) than go on the injections.

Anyone have any advice here? Anyone refused/questioned the injections? I’m in a tough spot with my mental health so I am also really worried about how this will affect it.

Thanks so much x

[R_elep]

Hi! I went on zoladex last year as I had quite large endometriomas and stage 4 endo. My surgeon was strongly advising it to make the surgery easier / the cysts shrink so that it’s easier to operate on.

Tbh I didn’t really look into it much (silly I know), as I was in so much pain and just wanted to do anything that would make things easier for the surgeon to help me!

In terms of symptoms, I’d say my main ones were hot flushes and thinning of my hair. For me, it helped a lot with the pain, and on the whole the injections were manageable.

It’s definitely a personal choice though and whatever you decide you need to be comfortable with! Maybe it might help discussing your concerns with your consultant / GP?

All the best! X

[TheUntamed]

I didn’t get hot flushes but I was more sensitive to heat. The pain stopped and I felt energetic again - to the point where I was wondering why I couldn’t stay on it forever. (I know, I know, bones.) Coming off Zoladex my cycle started again a month or so later despite the Mirena, and my emotions about having kids were all over the place. It wore off though and I’m feeling great!

[Awwy]

Hi Louisehart1995,

Ill be honest I was in so much agony and had tried so many different combinations of pills, pain killers I wasn't functioning on any level and bedbound. So I was desperate I didnt give it a second thought.

I started with Prostrap. The problem with that for me was it didn't last longer than 6 weeks and I'd be back in pain again. I tried it for 10 months and was still bleeding.

In the meantime I wasnt happy with the level of care I was getting from that hospital. No empathy, dismissive, being gas lighted. So I asked for a second opinion and got GP to refer me to a BSGE centre.

This man was amazing. He listened and apologised for my previous treatment. Did a proper history. He switched me to zoladex and I have it every 10 weeks. It does wear off for me but I dont get as bad as I did with the other one. I bled for about 6-8 weeks when I started it though so don't worry it does stop. 😳

I had add back therapy of Tibilone which I was fine with.

In terms of mental health i was fine on both but I am on antidepressants. I was also having private treatment to cope with my mental health so that might have helped.

Side effects I did have were my bones hurt especially in my legs. So I added in osteocare liquid. ( I didnt know at the time but I also had an autoimmune condition which explained the pain in legs and wasn't to do with the GNRH)

Hot flushes- yep 🤒 my goodness didnt expect them. I added in Sage tablets and they took care of that.

I've been waiting surgery for stage 4 endo for 3 years now.

Hope this helps. Take care of yourself. 💜

[wanwood]

I was told too many surgeries can do more harm than good. So it is worth trying options that allow you to go longer between surgeries. I’ve had 2 surgeries and been on GNrH injections twice (once for 9 months and once for 3 months) and honestly I would take the injections over more surgery every day.

Personally I find with having a period that it usually makes me feel depressed the week before my period starts, and I don’t have the same negative thoughts or the emotional roller coaster once the injections have fully taken effect and my period has stopped. So my mental health was probably better on them, I suppose other than the fact that the first time around I was really struggling with years of infertility and it felt like a backwards step in be in menopause, even though it probably helped my fertility in the long term. The process also made me feel a bit more irritable but recovering from surgery can do that too! If you are on injections for 6 months, you can have add back HRT to avoid hot flashes etc.

[Louisehart1995]

Thanks so much for your advice everyone- really appreciate that! I would say my pain is being managed by being on the mini-pill so on the whole I’m okay and able to live a fairly normal life without too nasty symptoms other than IBS symptoms and general pelvic pain (but ohhhhh what I’d give to be “normal”!), so I suppose I don’t feel like I’m in a desperate need for pain relief (for now, at least!). My preference would be to stay on the mini-pill for a bit longer and keep an eye on it but I just don’t know if that’s an option. I’m hoping I can discuss all this with him but he seemed very keen to get me on the injections.

Some of my concerns with the injections are the hot flashes- I have an intense job where I’m mainly in the office and travel a lot and I worry with that will impact this (basically I’m worried about losing my job!), and my grandma has osteoporosis so I’m not sure if this would be a risk.

[D2594]

Heya

I had my first surgery over two years ago apparently the surgeon had seen stage 1 of endo but removed fibroids too, he put the coyle in but bad it removed after 3 months as it did not work and my mental health went really bad too. December 2021 I had a massive flare up ended up in a&e and back on the journey of endo.

I saw a different surgeon who is a specialist in endo. I explained I've tried the pills, mini pill and coil and at wits end. He suggested the injections.. called it weed killer. I left crying I was like I'm 27 I don't want to have a chemical menopause however after another month of pain I decided to go through the journey.

I had surgery last week, I'm thankful I went on the injection as I during surgery it had been said that I went to stage 3 so I could only imagine if I didn't have the injections monthly and be on HRT (tiblone) what would have happened.

My periods stopped 5 months after starting the injection, that's when it hit home for me however I this month will be my last injection I have as it was agreed after surgery to have my last one and have a final 4 weeks on the HRT.

My mum has osteoporosis, which I was concerned about. I must admit I bruised alot easier than usual, my hair grew alot funnily enough and I lost weight rather than gained.

Surround yourself with people who are supportive and know you.. I had a couple up and down days but nothing bad.. my mental health dipped before the injections if anything..

I found when I had the injection it would be 5 days later I'd become a bit teary or irritable but then I'd be ok.. and this is ok..

I tried to explain to those around me that going throigh menstruation normally is quite relieving to some but when you have endo.. its like a battlefield and being place pillar to post especially when you meet thos who say painful periods are normal

L

I have begun reading this booI think you might like this book – "The Doctor Will See You Now: Recognizing and Treating Endometriosis" by Tamer Seckin, William Croyle.

Start reading it for free: amstarts to zn.eu/afwdFbZk on zon prime

It's been an interesting read..

I hope your journey starts to get brighter and better days are ahead for you xz

[hvco]

I started with Zoladex injections in July 2022. I really didn't want them, but my specialist wanted me to try them to see if menopause would help with my pain before agreeing to give me a hysterectomy (I'm 31).

I wish I'd tried it sooner! It almost completely got rid of my pain and I had so much more energy and my mental health improved enormously as a result. I did have quite severe hot flushes and night sweats, but it was better than the pain I had before! I already had brain fog before the treatment so I didn't notice much difference in that regard.

After 3 months I started taking Tibolone (Livial brand) as add-back HRT. I have a serious family history of osteoporosis so I was quite worried about going that long without HRT, but I had a bone-density scan and everything is fine. The Tibolone has really helped with my menopause symptoms, but I have had a bit of a recurrence of Endo symptoms since starting it (though nowhere near as bad as before).

For one month I did have a generic brand of Tibolone when I was struggling to find Livial and it was nowhere near as good. I started having minor hot flushes again, but they've gone away since I got my Livial back.

[Jillyminf]

Hi LouiseI went on prostap injections a few years ago to shrink a fibroid before surgery ( I also have endo) For me personally they were horrible. It was a horrible 9 months. I went in to a temporary menapuase, had so many hot flushes all the time like 2 an hour, put on weight, I felt horrible and very depressed. I knew I would, as I react badly to hormones so I tried my best to avoid the injections but in order to operate the doctors said I had to do 9 months of these. The injections we are intense and I really bruised at the injection site.

For me it was a horrible experience which took my body a couple of years to recover from. We're all different of course but I would avoid if possible given a choice

x