Dienogest

[Welshpearl]

Hi all,

My 17 year old daughter has just had her follow up post op appointment following a laparoscopy which she had last October. She has confirmed Endometriosis and all the surface (that they could see) Endo was removed. Unfortunately her pain has not improved and she says it's the same as before the op. The consultant has recommended she could go on Dienogest to try and help. She is scared of what might happen to her. She's currently taking 2 Desogestrel per day to stop her periods and is reluctant to swap as she ends up throwing up with pain when she has her period. What experience have others had? I've heard mixed.

Also if there are any other young girls my daughter's age going through the same and would like to get in touch with her for support - my daughter feels there's not anyone she knows her age and would like to speak to others, pls message.

Many thanks.

[User_2468]

hey, I’m not your daughters age and have only been diagnosed now aged 32 but I do remember what my pain was like at the age of 17. Maybe a local support group could help? Even if some people there may be slightly older, they will still be able to relate and hopefully give support. I am yet to find a support group myself. I’m on dienogest now and have been for 3-4 months. After some initial symptoms (spotting and slight pain) wore off, my period has been suppressed which has stopped my symptoms. I personally don’t want this solution long-term but just wanted to share that I’ve had a good experience on it so far. Although it’s going to be challenging for your daughter, having a diagnosis is a great starting point. I hope she finds all the support she deserves 🤞🏽

[Welshpearl in reply to User_2468]

Hi,Thank you so much for your reply and your kind words. My sympathies are with you that it took so long to be diagnosed. I can't imagine what it was like for ladies like yourself that were going through all this and not being taken seriously as so little was known back then. Hopefully now that this horrendous disease has been brought to the forefront and women's health is starting to be taken more seriously from GPs - them being the first port of call, it will be a bit easier for future generations of girls/women.

Thank you for sharing your experience of being on Dienogest, I appreciate that everyone experiences are different. My daughter is still too scared to switch from her Desogestrel as she doesn't want to risk an horrendous flare up on the crossover.

I hope you find a group shortly but even on platforms like this, it brings comfort to know you are not the only one going through these terrible experiences and that there are people out there that genuinely care and can offer some help. Wishing you all the best.