Prostap longer than 6 months?

[Honeybeehappy]

Hi there. I’m currently on Prostap with Tibilone to manage my stage 4 Endo with adenomyosis, fibroids and an endometrioma. I’m 49 soon so prob perimenopausal. I’ve had a long history of open surgeries, laparatomy etc. so no stranger to surgery.

My symptoms are currently very manageable although my cyst is a bit annoying. My period is still arriving regularly but they’re not painful anymore with HRT patches. I’d rather they just went away. The pill doesn’t work for me as it made me depressed so patches were a good choice

I recently had a consultation with a gynae surgeon who immediately started talking about total hysterectomy or oophrectomy. I don’t want this and really feel it’s radical. I don’t feel she gave me choices and never even spoke about removal of fibroids or the cyst only.

As a trial to stop my periods and stop the endometrioma growing, I have been put on Prostap for 6 months and already feel good. I’d rather have the cyst removed and then just stay on Prostap til natural menopause but this needs discussed.

Has anyone been on Prostap longer than 6 months to manage Endo as an alternative to surgery?

[Username12345678]

hi, I was in a very similar situation to you. I was on Prostap on and off for 2.5 years. It worked for me but my consultant was reluctant to keep me on it due to the risks. I eventually opted for the hysterectomy and had that last January. Wish I’d done it sooner! My consult was fantastic and in her opinion, if the Prostap works for you, a hysterectomy should really help. It did for me, finally have my life back! I do have some menopause challenges (mainly brain fog) but I guess I would have gotten those naturally anyway. I’m 47. Feel free to DM if you have more questions x

[Honeybeehappy in reply to Username12345678]

Thanks for that. Glad that things worked out for you. Do you know why your consultant was reluctant to keep you on it?

[Username12345678 in reply to Honeybeehappy]

There is a risk of oesteoperosis in long term use so some consultants don’t like to prescribe for more than 6 months. It’s possible to take it for longer if the benefits outweigh the risks and you can also have bone density scans to measure the effect. But ultimately I think it’s down to the consultant and patient to decide.

[Goiaba]

Hello! I was on Prostap for a year and never been better. My consultant said the same thing - if Prostap works then hysterectomy will be the best solution long term.

I had adeno, 3 endometriomas, a lot of endo everywhere with a frozen pelvis. I felt great with Prostap, better yet without any HRT as Tibolone really messed with my mood. It was a temporary arrangement though before going forward with the surgery that I agree, is radical, but now I’m 3 weeks post op and even with all the hard work of recovery I already feel better than I’ve been for the last 4 years.

I removed everything - womb, ovaries, tubes in separate surgeries as we tried everything before going for a bigger surgery. I’m 30 years old and honestly, I wish I had done it sooner. From my experience, removing the cysts only made them come back stronger. When I decided to remove one problematic ovary, then the other got angry and started to compensate and make even more endometriomas.

No one knows the risks of staying on Prostap long term, even with HRT it can bring more problems down the line. Even so, the suppression of symptoms does not mean your endo is stationary - have you had a follow up MRI to monitor since you started taking it? Only saying that because mine kept growing, so surgery was necessary anyway.

Hope you find enough info to make a decision 🌟🌟🌟

[Honeybeehappy in reply to Goiaba]

Thanks for that and I’m really glad it worked out for you. I can’t do MRI as I’m claustrophobic and had to abandon the scan. I’m trying to balance pending menopause that could just end it all soon, with surgery that’s perhaps not essential in my case. Would you mind me asking, do you have any unwelcome complications with the hysterectomy?

[Goiaba in reply to Honeybeehappy]

Have you had any other scans at all to try and monitor like an ultrasound? Sometimes a skilled radiographer can identify endo with it. It will show cysts as well.

Although hysterectomy doesn’t cure endo, it is curative for adeno so you’d definitely benefit from it on this side and to excise all the existent lesions that won’t go away. Depending on the stage of your adeno you could try the mirena coil, have you considered that? Unfortunately it didn’t work for me but some people have great results and it is minimally invasive!

I haven’t had any complications but the surgery, but I am only entering my 3rd week of recovery. I had a robotic surgery and my recovery was way way better than usual laparoscopy, so defo recommend this route! If you see me, you wouldn’t say I had anything that big done 3 weeks ago!! At the moment I have no pelvic pain at all, only residual left leg pain because I had a lot of endo on that side probably touching a nerve, so not really related to the hysterectomy part of the procedure. Still, very manageable with ibuprofen when it gets too bad. I’m very curious to see how intercourse will feel from now on, as this was my concern - the pain was unbearable and I’m hoping it will also be gone for good 🙌🏼

If you have any other questions please feel free to message me! Happy to update you after my follow up (it’s on Friday eve). I was desperate prior to my surgery as I couldn’t find people in the same position as me and once I did in this forum it put me at ease. I’m sure you will be fine whatever you choose 💛

[Rainbow2468]

I'm on the same position they always push for hysterectomy, but they can cause other issues so I'm refusing a hysterectomy, as I don't want to end up in a worse position them I'm in now ❤️

[Honeybeehappy in reply to Rainbow2468]

Thanks for that Rainbow. That’s what I’m worried about. My endo symptoms are manageable right now and I’m genuinely worried about unnecessarily messing with things that might create more problems. I don’t want to end up a with a prolapse, no libido or bowel issues. Everything is stuck together and my last laparatomy in 2012 was 4 hours long just for adhesions and a large endometrioma. What’s your own plan?

[Rainbow2468 in reply to Honeybeehappy]

To be honest I have no idea and it's keeping me awake at night. I have an appointment with gynecology next week it was supposed to be today but it was canceled due to the strikes. I've been peri menopausal for getting on for thirteen years now, so I'm hopeful that I'm nearing the end, I asked for a second opinion hence my appointment as the gynecologist I saw last was horrible. I'm a carer for my daughter and she just told me to get another carer in 😔. She said one thing on the consultation and another thing on the report sent to my doctor surgery, so I don't trust her now to be honest. I'm hoping to stay on prostrap as that's working and apart from a few extra night sweats and hot flashes no issues so far x

[Rainbow2468 in reply to Honeybeehappy]

I did my research on hysterectomy and I definitely want to avoid it to be honest x

[Honeybeehappy in reply to Rainbow2468]

I hear you! I’d be really interested to hear how you get on. My GP is supportive of my choices but I think he’s also encouraging the hysterectomy. I’d like to know what the issues are for longer term Prostap use. I know it’s licensed for 6 months use but I’ve heard it being used for longer if it’s working. To be honest, I’ve been on hormones for the past 12 years between ivf, endo treatment and perimenopause so I don’t really know what the issues could be. Your gynaes comments were really unprofessional. This is our body and it’s not a flippant case of major surgery and disposal of body parts just because that’s the gold standard. It’s not for everyone and choices should be offered. X

[Rainbow2468]

Thank you and I agree, the issue is the concern over bone density but when I was at the doctor's the clinical practitioner said that why worry and when I looked into it, it is only a small chance so I thought I'd take a chance. And I will let you know, hopefully it will be good news 😊

[Honeybeehappy in reply to Rainbow2468]

Thanks so much for that. Good luck with the consultation. X

[Rainbow2468 in reply to Honeybeehappy]

You're most welcome xx

[Rainbow2468]

I'm there on Thursday x

[Rainbow2468]

Hi there my consultation went really well he was just lovely, said as the prostrap is working I can stay on it as long as I like. He has recommended I take a vitamin b suppliment and light weight lifting. I was so relieved feels like a weight has been lifted xx

[Honeybeehappy]

Hi there. Glad to hear your consultation went well. That’s great. I’m really interested that you’re being supported to stay on it. Are they going to keep an eye on your bone density? If you don’t mind, how old are you? I’m 49 next month and not sure how long it will be til real menopause kicks in but ideally would want to stay on Prostap til nature took over. 😁