Adenomyosis

[Fowlers]

Hi

I have just been told this week by my gyno that I also have Adenomyosis and that there is no real way of diagnosing it! Is this true apart from horrific pain (especially when in the bedroom) it is driving a wedge between my hubby and I.

I suffer terrible endo and have it removed numerous times.

I tried the Mirena which was ment to help with this problem but to no avail.

I last 7 wks and had it removed (painless) and didnt even take as long as a pap smear.
I removed it due to massive weight gain, bloating, backache, explosive mood swings and non stop bleeding. Since removal I am actually loving my life and kids again.

I have 6yr daughter, 3 1/2ys twins (boy and girl) and 5 1/2 mth boy.

I was told a hysterectomy was my only option, this is fine but I am only 34 and feel to young to have this.
Does anyone have the same problem or advice.? Is it a full hysto that is done and you r periods stop or is it only partial.

Thanks

[desist]

Hi Fowlers,

An MRI scan can determine if you have Adenomyosis.

I had a Mirena inserted late 2008 and was in very bad pain for about 2-3 weeks afterwards. Since then the Mirena has not really caused any problems.

I started taking the drug Lyrica just over a year ago (or was it 2 years?!). It targets nerve pain and is commonly used for epilepsy/arthritis. You have to take it for about 2 weeks before noticing any change, but it has definitely helped me. Might be worth asking your gyno if it would be a suitable option for you.

Your periods would stop whether it's full hysterectomy (uterus & ovaries) or partial (just uterus). I was given hormones to stop mine a few years ago and luckily they haven't really come back after stopping the hormones a year ago. Not bleeding saves a LOT of pain!

Cheers

[Fowlers]

Hi desist

Many thanks for your reply.

I will speak to my gyno next visit, I have printed your reply so that I can take it with me to remember.

Certainly sounds like its worth a try... anything just to not have the crippling pains.

Many Thanks Again

[desist]

No worries Fowlers, I look forward to hearing how you go at the next appt. And if Lyrica is not recommended, I'd be interested to know why (maybe there's a reason I shouldn't be taking it that I don't know about!)

Thanks

[cherrycherry]

Hey guys,

Im new on here and have been reading through this thread (even though its old ) I too have just been diagnosed with Adeno and am 26! we have been trying to get pregnant for a year with no luck, I see Dr Tsaltas also and he has recommened IVF as the next option. Has anyone had any luck conceiving since their last post? or any updates on how your going?

[nothing2lose]

Thought I would bump this thread.....

Anyone out there been diagnosed with adenomyosis??

I was diagnosed about six and a half years ago.

Would especially love to hear from anyone who conceived and carried to term after being diagnosed

Thanks!

[nothing2lose]

[KMum]

Thought I would bump this thread.....

Anyone out there been diagnosed with adenomyosis??

I was diagnosed about six and a half years ago.

Would especially love to hear from anyone who conceived and carried to term after being diagnosed

Thanks!

This seems like an old thread, but thought I'd check to see if anyone else still checks in.

My story, I have always had very painful and heavy periods, I can remember staying at home from school often with a hot water bottle when I was a kid but I just thought this was how it was meant to be as my mum was the same and had never looked into it. I was formally diagnosed with adenomyosis last year, while having my mirena replaced after significant pain returned after a little less than 2 years of having it put in. I had been diagnosed with endo in 2009, so had the mirena inserted hoping to mask my symptoms. Then last year, my gyno was concerned at the intense pain I was getting in my abdomen, back and shooting down my thighs, so, he wanted to do another lap, and obviously had to replace my mirena at the same time, while he was fairly certain that by just seeing my enlarged uterus was proof enough, he followed up my lap and mirena replacement with an MRI a week later in which adenomyosis was confirmed. Apparently, I will not get the full 5 years relief I had hoped with the mirena. This time, again, it has helped initially, but after less than a year, my abdominal pain, and pain in back and legs has returned much quicker and is slowly getting worse.

During the time of ovulation and period, I can look 5 months pregnant as things obviously swell quite significantly, so I have taken to wearing loose fitting tops to avoid any embarrassment. Bowel problems are also intense during these times.

I have finished my family, I am 34 now. I had naturally concieved identical twins eight years ago (c-section), before any diagnosis was made. It took us about 12 months to fall pregnant. My twin girls arrived 12 and a half weeks early and it was a very tough introduction to parenthood, with very few answers as to why they were so early. My gyno has told me now that adenomyosis can greatly increase your risk of premature birth, but as to whether the adenomyosis was there prior to childbirth, he can't be sure as nobody had ever looked for it. So I am still unsure as to whether this caused their early arrival, or if it was simply the fact that there were 2 at once which is risky in itself for early labour. He has told me that young women can have it as can older women, there seems to be few concrete answers out there unfortunately. I would have loved more kids, but their early start did scare hubby and I off, and I have now been told after my diagnosis that it may not happen now for us anyway due to the severity of my adenomyosis.

Anyway, at 34, having had 2 beautiful children, and 2 mirenas later, I am seriously considering having a partial hysterectomy. I'll be honest, I'm not ready and didn't think I'd have to consider this for years to come, but with the mirena relief lasting as short as it does for me, and the fact that with breast cancer in my family, I didn't like the of being on the pill along with the mirena, I don't see any other options.

Many of you are correct in saying others don't understand, there seems to be a constant complaint with this disease, and I find, apart from constantly complaining to a very understanding and beautiful hubby, I do find myself suffering in silence a lot of the time. The regular pain just gets too much sometimes and I just want to sit down and cry. Worse is the fact that we've just moved from the city to a much smaller town where I don't know anyone, and I now need to find a new gyno that hopefully has the same understanding of this disease that my old gyno had. If anyone has any tips on one in Townsville, Qld, I'd love some info. The thought of flying back to Brissy just to deal with it all seems a little crazy!

I'd love to hear any other recent reports from anyone struggling with this disease.

[cherrycherry]

Hi Kmum

I Havnt posted since 4 years ago, but thought Id respond and hope this helps you. I have just had a baby girl 3 months ago, I was diagnosed with adenomyosis and endometriosis at age 26 I am now 29. From what my specialist and even the ultrasound techs have said to me is that having adeno does not effect the pregnancy a all, it does make it harder to become pregnant but once you are it won't cause premature labour or anything like that as it didnt with me. Believe me, I was so paranoid throughout my pregnancy I called all these high risk specialist who all reasured me things will be fine. Have you tried seeing at naturopath and tried taking krill oil and vitex? I believe they helped me as it stops the inflammation in the body and vitex helps create more progesterone. I'm not familiar with specialists/naturopaths in your area as I am from Melbourne but I am sure there are plenty around. Good luck :-)