Dienogest to Prostap

[Squidge511]

Hi all,

I was diagnosed with endo in 2018 after a laparoscopy and it has since come back with a vengeance. It has been 2 years since I went back to my GP saying the symptoms have come back and I'm still in this merry go round with no clear end. After my most recent MRI, my consultant has said there might be high likelihood of a colostomy bag/removal of ovary. The pain has been unbearable as many of us know and I was at breaking point earlier this year.

In April I was placed on dienogest to control symptoms and this has changed my life. I have put on weight (which I'm trying really hard to manage) and developed further anxiety but the quality of life I have gained back is worth it.

However, I've just received a letter from my surgeon saying he would like be to go onto prostap for 3-6months prior to surgery (which I haven't even got a date for and seems like another million year waiting list). Prostap symptoms seem SCARY and it's really something I wanted to avoid.

Does anyone know the benefits for prostap over dienogest? How much impact will it really make? Can they deny me surgery if I refuse them?

I'm also getting married in July next year and I'm terrified of the additional side effects and not being able to enjoy the run up or my big day. Dienogest really has changed my life and I'm so scared to undo the good it's done. I cannot go back to how it used to be.

[East_end]

I know nothing about prostap, sorry I am unable to help, your story sounds very familiar. Progesterone has worked for me, but recently I have experienced all the side effects, not sure if winter has a contributing factor to the low moods of recent. Thanks for the heads up, I’ll look it up just incase i am offered it.

[Squidge511 in reply to East_end]

I hope you manage to find a treatment that works well for you! Dienogest took a few weeks to settle down for me but it really has been a game changer, hence why I'm reluctant to change!

[HedgehogMad]

My specialist had me on dienogest pre and post op. He's not a fan of prostrap. He's the regional endo lead in my area. If you're happy on dienogest it's worth challenging them and asking whether you can stay on it

[Squidge511 in reply to HedgehogMad]

It's crazy that so many specialists think different things. I'm also under the regional lead of endo in my area too 😅 How can the research and thinking be so different?! We've got no hope if even they can't agree!

[Moonglo in reply to Squidge511]

I agree with HedgehogMad, if your current treatment works, I would also challenge their suggestion to change it.

[Faylen34]

I have no experience on dienogest to compare but I have been on prostap for 6 months (i have injections monthly). It is important to remember that it can affect everyone differently but this is my experience. After an initial rocky first month, my bleeding completely stopped (prior I bled everyday and periods were debilitating). I haven't had any bleed for 5 months and the removal of additional ovulation pain and the traumatising period week hugely helped me. The only side effects I have had are hot flushes which yes do sometimes drive me mad and occasionally randomly emotional. I am on HRT for this. I didn't really have much at all but post surgery I seem to have more flushes not sure why. For me it has been worth it and in all honesty I am terrified of coming off it.

My specialist started me on it to help my symptoms and also prep for surgery too. I would share your concerns with your surgeon and ask the differences between prostap and what you are on now and what would be the benefit of swapping.

It is definitely a scary decision when you've been used to something else. If you do go on prostap, I would say to definitely give it a good few weeks chance to settle first and get HRT (I have oral and gel) and once settled it can be a game changer x

[Squidge511 in reply to Faylen34]

Thank you so much for your reply. I think part of me is scared because it seems to be radio silence between appointments and letters and I'm worried about being left in limbo if the switch in treatment does go wrong.

I've been told the surgery will be extensive and quite dangerous, possibly facing a bag and loss of organs so if the prostap makes it safer then obviously I want to do it but, like you, I'm terrified of coming off what has helped me so significantly!

How long do you think you'll be on it post surgery? I've heard varying things about how long someone should be on it for x

[Faylen34 in reply to Squidge511]

I completely understand. That's how it felt for me too as my specialist said start prostap see you in surgery so I felt quite alone as at time it was a year wait minium. I was fortunate/unfortunate as I felt so ill I ended up in hospital twice and then she got me in as an emergency so I was on prostap 4 months prior and told to finish the course so had my fifth injection 2 weeks after surgery, then had my final sixth one yesterday. I was told to finish the 6 months and then that's - they said prostap is only licensed for a 6 month treatment due to long term side effects. However you can stay on it longer but you have to sign papers and it is provided by external pharmaceutical company. I need to have a proper think over next 2 weeks whether I want to come off. I was very focused on fertility this time last year and was told I have 6 months to try explore that avenue if I want to before the endo causes problems again. But now I feel a bit traumatised by the last few months and unsure whether to just stay on it.

While waiting for surgery I can't recommend enough to make yourself heard. Email. Call the secretary. Ask for a call or appointment if you are struggling during the waiting time or need advice on the prostap. I did not advocate for myself very well and wish I'd of been more vocal - likely why i ended up so bad in the end. I will be stronger moving forwards.

Sounds like we are similar, mine was extensive too and high risk of stoma etc. It was one of my motivators to do prostap to try help stop the spread etc. Feel free to message me if you have any questions on the surgery or process x

[Saranyakowsik in reply to Squidge511]

Hi sorry to hear. I had been on similar situation heavy bleeding with severe pain fatigue during periods since started menstruating when 13 yrs old. Diagnosed with 2 endometriomas in left ovary and pelvic adhesions in 2014 got laprascopy to remove endometriomas and was on ocp in India got married got pregnant naturally delivered in 2017 in USA may got mirena in july 2017 removed in dec 2022 was on ocp until 2024 jan got fibrocystic changes and fibroadenomas in breast. April 2024 got biopsy and endo symptoms started severe constant rectal pain flew to India in may got diagnosed endo in pouch of douglas,uterosacral ligaments and pelvic peritoneum lining through mri scheduled surgery in 2 weeks as my husband had to come from USA when I met the surgeon who is the best endo and uterine surgeon in India in chennai he asked me to come the previous day and get admitted over phone so I get surgery when he comes next day it is that fast in India once diagnosed but I had to wait for my husband he removed all endo in my bowel, peritoneum and bladder. DM me if you're interested in more details he gets referrals from Asian countries for complex endo and uterine surgeries. I felt made a good decision flying back to India even ultrasound appointment here wasn't any sooner. But he didnt put me on suppression as we wanted to conceive symptoms returned after every periods I was put only on antibiotics when I came back to USA had to go to ER luckily got an early appointment with gyn surgeon due to cancelation and she put me on lupron for 3 months now on mirena since last week. I'm thinking to get uterus and ovaries, cervix removed in India from same surgeon next year as I was told by fertility clinic here that natural conception will be tough for my age with severe endo now. I wish I had uterus ovaries cervix removed in the past surgery.