Worse on Prostap

[SardonicEndo]

Hi, this is my first post here.

I had an MRI at the end of last year confirming widespread deep endometriosis including adhesions with my right ovary stuck between bowel. I was put on monthly Prostap injections & Tibolone while waiting for surgery. I also have a mirena coil in already.

I absolutely hate being on Prostap 😡 so I'm constantly trying to decide if I should stop them. I had my 4th last week. Side effects I have are:

- Insomnia (can go days without sleeping)

- Hypersomnia

- Mood Swings; I've never really struggled with moods but can go from fine to fuming in a split second for no reason now! It's rare I cry normally but sometimes I have to stop myself from crying multiple times an hour now

- Muscle & joints aches

- Worse bladder symptoms & had a urine infection the 1st month.

- So tired, all of the time, just no energy!!

- Brain fog

- Headaches

- Hot flushes & flashes

- Nausea & even worse appetite than normal so weight loss too

- Dry skin: didn't matter if I missed a day or 2 before but now I'm using hydrating toner, face oil & cream 3 times a day & even then can get dry, itchy, flaky, red skin around my mouth, nose & eyes. Also needing vaginal moisturiser to prevent irritation.

- Dry eyes

- Hair loss (thankfully not clumps)

- Poor Mental health: it's a really stressful time anyway but I definitely noticed feeling lower even when I first started Prostap. It's strange though because it doesn't feel the same as Depression. It's not constant. It kinda acts like my mood swings, changing all the time so sometimes I'm OK. It definitely changes throughout the month & is best just before the next injection.

On top of all that they don't even seem to be doing much/anything for my pain/symptoms. I haven't had any vaginal or rectal bleeding since starting Prostap, but I had very little period wise before because of the mirena anyway.

I recently had nearly 2 weeks where the pain was better than it had been. I had a day or 2 with no painkillers! and was able to do more I was hopeful the Prostap was finally working but the pain crept back up & a bad flare started 2 days before the 4th injection. It's improved a little since but I'm still needing paracetamol, naproxen, tramadol, tens & hot water bottles every day atm.

It seems the little hiatus was just my normal Endo fluctuations. I think the Prostap is doing a very small amount but symptoms wise it just doesn't seem worth it.

I don't have a date for surgery other than hopefully in the next 3 months. I just don't know if I can cope much longer on Prostap, the whole thing is just getting me so down. I feel like I have no life at all. I only feel remotely human the last week ish before the next one.

I spoke to my GP about changing my HRT so they wrote to the gynaecologist 6 weeks ago. Long story short, he's recommended I try Oestregel along with Utrogestan. I had to chase it up & send the GP the letter from gynaecology but they've still not sorted it.

I'm feeling lost, lonely & desperate.

Has anyone else had similar experiences on Prostap? Has anyone tried Oestregel & Utrogestan?

Any tips/advice on coping with side effects?

Has anyone been told the Prostap made the surgery easier/better even if it didn't help your symptoms?

Thanks for listening. I'm sorry for the really long post!🥴

[Sunset-lady]

I'm on zoladex and normal HRT and although I'm bleeding still and get headaches now my mental health is better. It's also shrunk my fibroids and my cervix and the endometrioma so I'm now going for a hysterectomy. You might find it better coming off synthetic HRT like Tibilone and the coil and going on natural progesterone like utrogestan. It takes a while to settle too. Mine took 4 months x usually 2 to 3 months x

[SardonicEndo in reply to Sunset-lady]

Thanks for replying.

It's good to hear you found a combination that works & I hope the hysterectomy goes well.

I've been on the coil for years & never seems to have trouble with it whereas never did well with mini pill, impant, COC, etc... I put it down to less systemic effects as the coil largely works locally. Do you still think I should try removing it?

The Gynaecologist did recommend utrogestan & Oestregel 2 weeks ago but I'm still waiting for GP to prescribe it. I'm hoping it will help.

When you say it took 4 months to settle, do you mean the Prostap side effects or the HRT? I've been on prostap & tibolone for just over 3 months now.

Have you been/are on Utrogestan? If so has it helped your sleep?

Thank you x

[Sunset-lady in reply to SardonicEndo]

I'm great on utrogestan. If the coil works for you just keep it. You are right that the progestin provided locally is much better than oral progestin. Zoladex took 4 months to settle with me but it runs out early x I need it every 60 days or I hemorrhage.

[SardonicEndo in reply to Sunset-lady]

Thanks Sunset-lady

[Babyd2803]

I too have prostap injections and I also have all of the above symptoms. This time around I've also gained apx 7lbs that I just cannot shift. Sorry not much help but at least you're not alone

[SardonicEndo in reply to Babyd2803]

Babyd2803 Good to know I'm not alone but sorry to hear you're struggling too. Are you on HRT? Just wondering if it would be worth asking to try a different one like I have.

[Sophie99x]

HeySorry to hear this having a terrible time.

Following this thread as I too don't feel better on Prostap injections.

I've just had my 5th injection for DIE while waiting for MRI result and excision surgery with endo specialist.

I'm still in pain but no periods.

I have been wondering if this meant my pain isn't endometriosis even tho I've had a diagnostic lap and biopsy confirmed it.

The specialist changed my HRT from Tibolone to eostrogel gel and progesterone 100mg tablet to take at night which has definitely resolved my insomnia.

This situation really is mentally draining and confusing.

I hope you find some relief 🙏✨️

[SardonicEndo in reply to Sophie99x]

Thanks Sophie99x . It's a relief to hear the progesterone has helped with the Insomnia, fingers crossed I see the same benefit when I eventually get to start it.

I'm convinced a significant amount of my pain is due to the adhesions which only surgery would remove. Also, my understanding from reading studies is that not all patients feel a benefit from the injections (although most do) so maybe we fall into that category?!

I don't know if it still helps reduce the size & inflammation of the lesions even if it's not helping symptoms...

Hope you make progress with the MRI

[Sophie99x in reply to SardonicEndo]

Hi

I've just had a letter saying the MRI doesn't show endo but likely adenomyosis

And that I'm listed fits surgery to remove endometriosis

So confusing 😕 From what I understand MRI doesn't always detect endometriosis 😬

Be sure to take the progesterone at night irs really helped

[EverlongFoos]

I was put on prostap and tibolone in November, whilst we deliberated whether to wait for nhs for surgery or continue down private route. On the MRI it showed stage 3 endo.

On the prostap I had similar symptoms and didn’t take the tibolone over fear of encouraging more endo growth. I had prostap for 4 doses, but it didn’t take the pain away. I reasoned that if you’ve got deep adhesions then the prostap is not going to fix that or take the pain away from that but only prevent more endo growth.

I had my excision surgery, bilateral oopherectomy and hysterectomy 9 days ago privately as I just couldn’t continue living like I was in the pain I was in. Ive been unable to work since October and I have a 2 year old who I’ve been struggling to look after.

Good luck with it all 🩷