I was diagnosed 2 years ago on the 31st of this month and had a combination excision & ablation to remove endometriosis from my pelvis wall, ligaments and pouch of Douglas as well as hysterscopy and insertion of the coil.
Sadly I only had 6 months of relief (until December 21) when all of my prior symptoms (stomach & back pain, trouble going to the toilet, fatigue etc) and constant bleeding returned (and I genuinely mean constant) I was put on microgynon again as well as the coil which only reduced the heaviness of my bleeding - it didn’t stop. I’ve now had my coil removed, I’m passing lots of clots and super heavy once more, I had another MRI last week as my consultant believes I may also have adenomyosis based upon what he could feel/ when he examined me straight after the coil being removed.
Has anyone been prescribed Dienogest before? I’ve never heard of it and I like to research ahead of agreeing to hormones as I feel I’ve literally taken the lot as well as prostrap and I’m apprehensive however I’m so upset at the prospect of more surgery only 2 years later, I don’t want this to be something I have to do every 24 months so I’d be open to a new pill if the benefits outweigh the side effects?
Would love to hear anyone’s experiences of taking this pill please? I’m back with my consultant 22nd May to review results and agree next step so keen to gather as much research ahead of this. 🥹
Thank you x
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LEH199
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My daughter takes dienogest pills, they have completely stopped her periods, but she still gets pain, not as bad though. I believe it is the same ingredient that is in the depo provera injection.
First, you don't have to take any medication that you don't feel comfortable with. This may seem like a really simple and obvious thing for me to say, but it's genuinely ridiculous how many times I've tried medication I didn't want to because the doctor was pushy with me and didn't ask if I was happy to try a new medication! So, if after you've done some research you feel that it's not right for you then please don't feel like you have to be on it just because your gynae said so.
Secondly, is your gynae a specialist? Considering he (or she, but usually he lol) did ablation I'm guessing he isn't a specialist! Ablation is a really ineffective way of dealing with endometriosis, despite some of these gynaes having their dinosaur heads firmly in the sand regarding this, it genuinely has a very high failure rate (as high as 100% in some cases) and is not an effective way of dealing with endometriosis. Burning it out with a laser leaves endo that may be hiding under the surface, so it is easy for it to grow again. Not only that, but it causes additional trauma to the area which means more endo can grow in new places, causing more problems. This is where you'll see people having multiple surgeries!
Now I've said all that I'll give you a heads up here, since you've had a surgery already and that's not been effective long term you are entitled to a second opinion from a proper endometriosis specialist. And i don't mean "special interest" or "specialist in pelvic surgery". You can request to be seen by a real specialist now because first line treatment (coil, medication and surgery) has failed. So please push your GP to get a decent referral! Have a google and see who your closest endometriosis specialist is, if you feel you can't do that I can massively recommend using Nancy's Nook, they can advise who is closest to you and help you get info to go to your GP with. Obviously this isn't fool proof, and there's still people who have had the absolute best excision surgery from a specialist and STILL have endo return, such is the nature of the endo beast lol. But, it's probably the best chance we have with this awful condition. I wish it was a cure, or a guaranteed help at least, but sadly it's not.
Most of all, please make sure you're happy with any treatment you get. If you're uncomfortable say so. If you don't want more surgery yet that's absolutely your right! You have to do what's best for you. But know we are all here for support if you need us 💛💛
Hi - before doing any other surgery, please see an endo specialist privately for a proper assessment. Dr Peter Barton-Smith of Endo clinic London is one of the best. It cost 390 the 1 hour long consultation and 390 the scan. Even if you then go back to NHS, presumably you are in the UK, it is best to have a specialist 2nd opinion privately. All the best!
I have been on Dienogest since November 2022 and it has stopped the bleeding although I do still get quite a lot of spotting. It has helped with the pelvic pain but has caused nerve pain which I am now on other painkillers for. The only other side effect I have had since taking it is weight gain unfortunately and nothing I try is helping me to lose weight. I am just trying not to be too hard on myself though.
I am on the waiting list at the endo clinic for a full hysterectomy (I also have Adenomyosis) but have been advised that it will not be this year and possibly won't be 2024 either. It is very frustrating.
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