Prostap for Endometriosis?

[CFin]

Hi everyone, I’d like to know if you’ve had experience where you’ve been put on Prostap for suspected endometriosis/ fibroids and NOT had improvement from it, and subsequently had laproscopy where endometriosis HAS been found?

I’ve been on Prostap (with Tibolone HRT) for 6 months but with limited improvement for abdominal pain. The gynaecologist thinks this rules out any gynaecological issues (seemingly includes endometriosis). I’m sceptical of this opinion but I’m doubting myself.

The gynae has agreed to do laproscopy, but at a cost to do it privately that would put me into debt. It would be worth it if there is a likelihood of it being found, but a total waste of money if I’m barking up the wrong tree. Alternatively I could go on the waiting list to go NHS but likely to be years to wait. And in the meantime my life is falling apart at the seams!

(For background, there are no polyps or adenomyosis ruled out by hysteroscopy, no bowel issues ruled out by colonoscopy, ultrasound and MRI found nothing, and can’t have mirena due to uterus shape. I’m 50 and very peri menopausal!)

[TogetherWeAreStrong Moderator Endometriosis UK]

Hi CFin welcome to the forum, I am intriguged by your post. I have undergone this kind of treatment twice in my life, when I was 19 and then aged 44, I am now 47. Unfortunatley, although it stopped my periods my symptoms came back after both attempts, I personally found the side effects to be quite strong. But we are all different and this could be the way forward for you.

I'm really interested to know how other ladies have found this treatment, but also CFin I think your journey is important and we would appreciate you sharing that with us...no preassure

[CFin in reply to TogetherWeAreStrong]

Hello ☺️ thanks for the welcome! More than happy to share. My experience on Prostap has been awful! I expected side effects, especially in the first month, and it was difficult but subsided (ish) after a few weeks as expected, and my abdominal pain did reduce but didn’t disappear altogether. Then in month 3 after being on it, I started getting pain in my joints and muscles, which worsened so bad that I have been struggling to walk some days, it’s like I have rheumatoid arthritis (which I don’t). I also had bad fluctuations in my blood sugar level (I’m not diabetic), my sugar would drop really low quite often sometimes multiple times a day, I’d have to drink/eat sugar to normalise. Also had heavy heartbeat, absolutely black mood and irritability, weight gain (more than a stone!), water retention and profound fatigue. So I think it was worth seeing if the treatment would help, but it didn’t work sufficiently well for me to warrant going through the side effects that were so strong for me. I wouldn’t want to have it again if I could help it.

[TogetherWeAreStrong Moderator Endometriosis UK in reply to CFin]

Wow! That's a lot to deal with! I feel the same as you, I would not want to have it again, if I could 🌈

[K2023 in reply to TogetherWeAreStrong]

hi, I have just had my 3rd Prostap SR injection.I was put on it as I have a ureter mass they think maybe endometriotic due to my history of endometriosis.I was at a point of not being able to bend or walk down stairs as with many other symptoms.The consultant said if it is endometriosis it will stop the pain, it did ease the pain but didn’t completely take all the symptoms away.I have always refused hormonal treatment ,but he has insisted I have no choice now as I need a complete hysterectomy .I was scared of it initially .I had bad headaches and nausea for the first week but settled by the 4th week .I felt like I had a vitality back ,my mood was lifted and I become quite calm and relaxed ,iam a highly strung person but I can honestly say nothing is bothering me winding me up or stressing me( very strange ) .The 6th week the hot flushes started but to be honest I can handle them .8th week I felt a strange light headedness but passed after a day .In fairness prostap has been beneficial.I have had endometriosis and Polycystic ovaries since 17 years old ,adenomyosis and mass adhesions and lots of surgeries I’m 48 now .

[TogetherWeAreStrong Moderator Endometriosis UK in reply to K2023]

K2023 thank you for sharing what you have been experiencing and your journey so far. I am so pleased that you are finding this treatment beneficial. Looking back, I wish I would have kept a journal/record of what I was experiencing but I wasn't aware of this forum at the time. It seems like we've experienced a lot of the same things over the years. Stay strong 💚