Adenomyosis and endometriosis doubling progesterone pill

[LS07]

Yesterday I was diagnosed with adenomyosis on a scan and probably endometriosis.

Initial options are the coil or doubling my progesterone pill. I’ve doubled and feel awful! Upset stomach and nausea, can’t be a coincidence?

Does anyone have any experience with the coil that’s positive? I’m at a loss of what to do as I’ve been bleeding 3 times a month since my covid booster. The pain is awful.

Many thanks

[Avourneen]

Are you sure it's not a coincidence ? you could just have picked up a stomach bug. I've doubled my pill dose while I wait for surgery and it has really helped as it has completely stopped my period. are you bleeding three times a month even on the double dose of pill ??? That sounds worrying,

I have adneomysiois and endo the two often go together. As far as I know the only good cure for adenomysiosis is a hysterectomy. Your stomach problmes could be caused by endo that has spread into the bowel but if the sonograher is good they should be able to see that on the scan.

The other issue is it could be something else I had terrible pains higher up in my stomach and have only been able to eat very little but I went for scan on higher part of stomach and went to see a gastroenterologist. He found I had gallstones and a hiatal hernia. I've changed the times i eat and that has helped a lot.

My feeling is it that it's probably related and my endo has grown further up into are near stomach diaphragm etc. I have to get another lap to check this.But my point is it could also be something else or it could be your endo has spread. Endo shows up well in most areas on an MRI but apparently not when it's on the diaphragm.

I'm really sorry I don't know at all about the coil as I haven't tried it. Maybe get back to your gynae and ask him/her for more help. I hope you get something done.

[Hidden]

Hi LS07,

I am very sorry to hear about your current situation, it sounds very hard.

I thought it might help to point out a great section on the Endometriosis section about Endo and Adenomyosis, including a useful interview with a top Gynaecologist Liza Ball - endometriosis-uk.org/adenom....

As Avourneen has suggested going back to your Gynaecologist or GP would be a good idea to discuss your options and next steps.

Although Endo can be seen on a scan, the only definitive way to diagnose endometriosis is by a laparoscopy, so this also might be worth discussing with your consultant if you haven't already.

On a personal note I have had the coil for nearly a year and so far have found it a positive experience, however, I should note that I am starting to experience some Endo symptoms more recently, as a helpline volunteer I hear a wide variety of stories regarding the coil and its effectiveness, some positive, some negative, so I think it just goes to show that everyone is different and we all respond differently to treatment options.

Wishing you all the very best for your ongoing treatment and please note the helpline number 0808 808 2227 if you ever want to talk through anything.

Take care x

[whatfam]

I had a bad experience with my Mirena, but I had a laparoscopy 2 weeks ago where they removed and reinserted another one, so maybe my experience will improve. I've read a lot of stories about people who've had 2 Mirena that were great and then their 3rd was awful, so maybe my first was just put in badly and this one will be better. FYI I have Adenomyosis but no endo. Here's my experience of my first mirena:

I've been having a really difficult time with the Mirena. Last year I quit the birth control pill because I wanted something that was a bit safer + I don't have to remember to take. The pill had been helping me a lot more than I thought, because within 3 months of being off of it my cramps were back to being horrendous 4 days of hell, and also sharp pains in my right ovary during ovulation.

After those 3 months I got the Mirena inserted. The pain during insertion was as severe as my cramps, but it only lasted a couple of seconds so it was tolerable. I had moderate cramping for the first 2 weeks and I was spotting for a whole month.

I've had the Mirena for roughly 10 months now. I forced myself to stick it out for the first 6 months. My periods have been lighter but now it basically lasts 2 weeks! I have spotting for about 10 days and an actual period for 4 days, but I have cramps over that entire 2 week span. I also have cramps during ovulation which are just as severe as during my period.

It's frustrating that I'm not sure if these negative changes have been caused by the Mirena itself, or if the Mirena is just ineffective for me and I'm experiencing what my periods are like. I was on the pill for 5 years before I took that 3 month break, so my condition may have progressed a lot without me realising.

I also experienced 6kg of weight gain in the last 10 months. Not blaming it solely on the coil but it's the first time I've ever gained weight so quickly and the most weight I've put in at least 7 years! I've felt noticeable more emotional since I've had the Mirena too.

The Mirena works great for some people, unfortunately I'm not one of them. I'm also not confident about having it removed in case it is actually helping and my pain gets even worse. I can't win. I've also had acne and eczema. I've never had acne before and I haven't had eczema since I was 16.