New user, 27, F, never had a baby, diagnosed with Adenomyosis!

Hi ladies..

I've recently been diagnosed with Adenomyosis after years and years of doctor visits who weren't able to tell me the underlying cause of my super painful periods. I would skip work whenever I am on my period because I wouldn't be able to stand straight, I would have indigestion and sometimes fevers, I'd be so nauseated that I wouldn't be able to eat anything at all. It's hellish really.

Only until last August I was told that I had Adenomyosis which is endo in the uterine wall and I was devastated at the thought of never being able to have a child if I didn't treat the condition sooner. My gyno said that my womb was swollen due to the condition, but my ovaries looked healthy so I'm hopeful that I can still be cured and try for a baby in a year or two.

I was offered Visanne (gnRh agonist) to take for 6 months but I refused to take up on the treatment as I went on a little research of women on it, and the side effects sounded really scary. So I decided to go on a monthly injection of Cyclofem which is a combined contraception that apparently isn't FDA aprroved in the United States and is only available in third-world countries such as Indonesia (where I come from), Iran, Mexico, and Brazil; if I'm not mistaken. 2 weeks into the treatment, I started feeling absolutely crappy with sore and bloated breasts (which was pretty cool cuz I never really had much boobs but it hurt like a SOB so I guess it doesn't mean anything lol) I had 24-hour migraines that never went away, and I was nauseated allll the time and sometimes even partially deaf and my heartbeat were crazy fast. Despite the side effects, I continued the treatment for 2 months (a total of twice injection, 1 injection done monthly) in hopes that I would at least see and feel an improvement in my period pains. But towards the end of the 2nd-round injection I was told by my bf's family gyno that the treatment just "doesn't make sense" in my case of adenomyosis and was told to switch to Cerazette the mini pill.

So now I'm on the mini pill and it's been 6 days. Amazingly I am back to my normal size (boobs and all) whereas when I was still on cyclofem my pants felt so tight to the point where I couldn't even feel my legs lol.

So far the only side effect I'm experiencing is pelvic cramps, much like the pain I usually get when I'm on day 1-3 of my period. But thing is this is 12 days after my period and I'm not even ON my period. I'm just wondering if this is normal. I've read some pretty horrible experiences on the mini pill such as gaining 2 stones in weight, going up a few cup sizes for bras, moodiness and even anger, acne here and there and some hair loss scare. How long do those start kicking in if I'll ever need to experience those? Although I do hope I'm one of the luckier ones that don't need to go through any of that.

Thanks and keep hustling ladies!!!!

xx

inds

#adenomyosis #cramps #cerazette #cyclofem #endometriosis #endo

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5 Replies

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  • Hello, I have both adenomyosis and endometriosis and I am 42. I have just been put on the mini pill so it's too early to tell you my side effects I'm afraid. I have been told by the GP to give it 3 months to see if I respond well to it as your body gets used to the new hormone. So, I think there might be more side effects at the beginning and then they could wear off. I hope it works out for you and you don't get any more pelvic cramps or other side effects x :)

  • Thanks for the reply! Before the mini pill were you on any other treatment or did you only discover you had endo and adeno recently? Reading stuff on adenomyosis on the net makes me wonder how I got this condition in the first place since I'm relatively younger than most women diagnosed with it. Doesn't make any sense and I'm super worried if it'll affect my fertility. I'm also still experiencing cramps on my left pelvis and it's been 13 days.

    How are you feeling these days? Are you experiencing any pain?

    X

  • I was diagnosed with endometriosis 10 years ago when I was 32 and over that time I have had 4 laparoscopies to excise it. At one point I was given Prostap injections to give me a temporary menopause for 6 months. My most recent lap was a month ago and that is when they discovered that I possibly had adenomyosis as well and suggested the mini-pill for 8 years! I am suffering from pelvic cramps but hoping the pill will help that as only just started it. By the way, I have seen a lot of posts by people in the endometriosis UK group on here about adenomyosis so you might want to go on there as well. Hope it works out for youx

  • How was your experience with Prostap? I was suggested the Tapros injection, don't know if they're actually the same thing but it does make me go through a menopause but I read that it doesn't cure adenomyosis. I'm so frustrated because I'm only 27 and would reaaaallly want babies asap but at the same time I don't want to seem like I'm rushing my bf for us to quickly marry and try to concieve to fix my womb problems. I'm on day 12 on Cerazette and day 18 feeling a constant cramping in my womb area. It really feels bulky and swollen, as if my uterus would fall to the floor any minute now! Sorry for the TMI. I just feel like bawling all the time and my bf, friends or family can't relate much with me since they don't know it's like so I sometimes don't bother sharing too much info. I did join the Endometriosis UK group as well! Lol. How are you feeling nowadays?

    Xx

  • The prostap was given to me after a laparoscopy for my endometriosis and I didn't have adenomyosis at that stage. It did make me feel better in terms of no periods but I got a lot of menopausal side effects such as hot flushes and was told by the GP not to go on that long term because it increases the risk of osteoporosis (especially as I refused to go on HRT alongside it). I am now still feeling the cramps but it is early days on the pill.

    I'm glad you have joined the Endometriosis UK group as well because they have a very large amount of people on there. You might want to do a post on there as well. I think it always helps to talk to people in a similar boat. Over the years I have been very frustrated and upset with my friends and family for not being able to relate to me and going on these forums has really helped me. There are also 'Adenomyosis Support UK' and 'Adenomyosis' facebook groups and the 'Adenomyosis Advice Association' website. There might also be diet, herbal/vitamin supplements and certain exercises to help. I am quite newly diagnosed with adeno so will let you know if anything I try helpsx