Advice on treatment

[Sheep2]

Hi Everyone, I could really do with some advice if possible. I have been taking Desogestrel, 2 pills a day for just over 3 months. I have had constant bleeding but no pain for most of this time. 2 weeks ago the bleeding stopped for a week but now its back. Its not as bad but the night pain is also back. My consultant is happy with my progress, my cysts and fibroids have shrunk and I'll be have yearly MRI scans for a couple of years. Surgery is to risky as I have endo on my bowel. I'm 49 with Menopause symptoms. She said if this pill doesn't work I should go on the injections and go into chemical menopause. I'm worried about the side effects of this though.

My pill nurse mentioned Provera last time I saw her so I don't know whether to try it, give this pill another 3 months or give the injections a go.

Sorry for the essay, I really don't know what to do for the best.

Any advice would be gratefully received!

Thanks for reading x

[Lindle]

Is this a consultant at an endo centre saying surgery is too risky as medication won't stop the endo progressing.

[Sheep2 in reply to Lindle]

Hi,Yes, it's an endo consultant. The endo isn't progressing my cysts have shrunk and the endo on the bowel hasn't changed. Surgery can be done but there's a risk of it resulting in a stoma which I'm not willing to take given my age and I don't feel my symptoms are bad enough.

[Lindle in reply to Sheep2]

It's good that you are in a specialist endo centre.

[Sheep2 in reply to Lindle]

Yes, I'm just not sure which treatment to continue with. The consultant was running so late last week I didn't get the chance to ask enough questions

[SavageGold]

HelloI don't know anything about digestorel. I can't even spell it sorry. But the advantage of Depo Provera or the one they replace it with, is that it'd administered one every 12 weeks and stays in your body unlike your pill. So it can't be pushed out by caffeine or an upset stomach. The Depo Provera Is known to have depressive side affects in many. But it actually boosts my mood when it's administered on time. I get all my symptoms back in the 10 to 12 weeks mark but I'm getting my depo at 11 weeks now to help. I've been on it for 12 years. I don't think you'll be on it for more than 5 years. Is there anything specific you want to ask about depo? You can look it up on Google. The company that make it have published the information about it but that doesn't give you human experience the same.😊

[Sheep2 in reply to SavageGold]

Hi, Thanks very much, I'll have a look online x

[Tina32]

Hi,

I was on desogestrel for about a year. Over that time the constant bleeding continued and I increased to 2 tablets. That seemed to lessen the bleeding for a couple of months afterwards and then the bleeding got worse. My symptoms were controlled but I just got fed up with the constant bleeding as it was very, very heavy and I bleed everyday with maybe 1 day of a break every now and then. I ended up having iron deficiency anaemia so I stopped taking it in January and the bleeding has stopped. It's such a relief.

I am waiting for surgery again though and I have to take zoladex for 3 months before my next surgery so I just weighed up that I would rather manage at the moment without desogestrel than continue with it. Personally I wouldn't take it again but that's just my experience.

I did keep mention the issue of the bleeding to my consultant a few times but he just advised that I go back on Yasmin which I previously had no problems with but my GP was not happy to prescribe me Yasmin again without starting blood pressure medication as I kept having borderline/high blood pressure on it. I didn't want to start medication as I now have a non functioning kidney because of fibroids which is likely contributing to the blood pressure problems so I continued with desogestrel until I just couldn't take it anymore.

This is a bit long winded but thought I would share my experience in case it's helpful for making a decision

All the best

Christina

[Sheep2 in reply to Tina32]

Hi, thanks for you reply, sounds the same as me, constant bleeding, it's a pain isn't it! I haven't managed a year, only 4 months. Hope you're ok now x

[curlyjo]

I was 45 when I had my first laparoscopy and they found endometriosis and adenomyosis so my story has similarities. Mine had also reached the top of the bowel hence the excruciating pain. Surgery didn't get me out of pain although the mirena coil did stop the bleeding eventually. Desegestrol was also given. I too was offered the GnRH drugs as my only option which I believe is the menopause drug you referred to? I was on 8 tramadol a day to function without pain when I read about a lady on this site who did an anti inflammatory diet. I asked my doctor if he would give me 6 months to get out of pain naturally. I saw the same dietician this lady had seen and followed the diet religiously. I'm glad to say it worked. The dr said this would be the future of endometriosis treatment after surgery 10 years from then (which is pretty much now). However I have seen few people on here advocate it so not sure if people don't know it's an option or aren't keen. As I was so near menopause I didnt have to be on the diet long because the pain settled as oestrogen lowered. I'm now under the lovely care of the menopause clinic managing those symptoms instead. If you'd like to know more about the diet please ask. Hope you resolve things and with time it wont be an issue anyway.

[Goiaba in reply to curlyjo]

I have also seen great improvement on an anti inflammatory and low fodmap diet, to a point back in 2020 that I considered giving up my surgery (which I didn’t!). It didn’t stop my disease to progress, my situation is quite complex, but the effect it had in easing my pain was unbelievable! I’d say surgery+diet saved my life.

[Seetheworld in reply to curlyjo]

I would love to know about this diet please if you could share any information 🙂 x

[curlyjo in reply to Seetheworld]

I saw Henrietta Norton at her clinic in Belgravia. It was a lot less expensive than it sounds. She did a diet survey with me then put an anti inflammatory diet together for me. You can read all about it in her book, "Take Control of your Endometriosis" I stopped having gluten, wheat, dairy and processed sugar. All of which feed oestrogen in our womb and increase inflammation. I also had various vitamins (she has her own company called Wild Nutrition where you can buy them) to help combat stress and strengthen my immune system (I was a teacher at the time). So this is the basic idea of the diet, but if you see her in person she will give you a bespoke programme. My headteacher gave me the day off school yo visit her clinic in London and that's where it started. I found the personal consultation encouraged accountability in keeping to it and it was just 6 months later and I was pain free. I'm pretty sure that my age helped too and that naturally falling oestrogen levels in my mid 40s contributed. Worth a try if you dont mind the effort and expense.

[Sheep2 in reply to curlyjo]

Hi, thanks, I'll look into that x

[lifegivesyoulemonade]

Hi,

have you consisdered Mirena coil injection?

[Sheep2 in reply to lifegivesyoulemonade]

Hi, I haven't heard of that?

[lifegivesyoulemonade in reply to Sheep2]

Hi, I am on minipill for five months but not working well for me, my GP suggested Mirena coil I am trying to book it now. here is the info: nhs.uk/conditions/contracep...