Adenomyosis - Other Treatment Options

I don't know if I'm posting this in the right place as this is my first post, so apologies if it isn't.

I have recently been diagnosed with Adenomyosis, had a scan as they thought I had PCOS (didn't) but they said I had Adenomyosis. Once they told me what it was I did the usual and goggled it! I know that a hysterectomy seems to be the cure.

I did speak to my GP about it, as I'd been having what I thought was bladder problems, constantly feeling like I needed to go to the toilet. Once he told me about Adenomyosis, I asked if I could be confusing the pain with a need to go to the toilet and he said it could be that or that is pressing against my bladder. I did ask about a hysterectomy and first he said no because of my age (36), but did mention chemical menopause, he then asked if I wanted anymore children and how fed up I was. Once I spoke to him about that, he said it could be a possibility. He referred me to a GYN appointment.

It takes me a long time to get my head around stuff and I think I'd was already thinking that a hysterectomy shouldn't be the first option, but it was an option.

I have just had an GYN appointment, I explained my symptoms and she has said that I should try a Mirena coil as that usually works, or I could have the pill. She did also say that she thought I might have Endometriosis, and they should do keyhole surgery to have a look. When I mentioned discussing a hysterectomy with my GP, I was told in no uncertain terms that I would not get one, she said they would not fund it because of my age and that Adenomyosis only causes heavy periods. When I asked about confusing the pain with a need to go to the toilet and or that maybe it is pressing against my bladder, I was told it can't be as my uterus is a normal size. That's why she's thinks I have Endometriosis, because Adenomyosis wouldn't cause my lower abdominal pressure.

I feel rather disappointed...Not because I really wanted a hysterectomy, if anything I have a real fear of operations and normally that enough to get me to run the other way! I just feel like she was very dismissive. As I said I've looked online and there seems to be a lot more symptoms than just a heavy period. I didn't say that, because I'm so tired all the time and just don't feel like I have energy to fight.

I've seen quite a few posts on here where everyone seems to feel 100% better after a hysterectomy but what are the other options? Did they help? At this point, I just want to feel better and I really needed a moan

Sorry, for such a long post, I feel like I've written an essay

Dear world:

Since you are getting conflicting diagnoses, I think you would benefit from a THIRD medical opinion. It's my understanding that hyst for adenomyosis allows you to keep your ovaries (if they are healthy), but a hyst for enometriosis would come with a recommendation to remove the ovaries.

I hope you are able to find the right answers soon. Keep reading & posting. I am sending huge cyberhugs

Hi world,

You're doing the right thing to get various opinions before making a decision because getting a hysterectomy is final. As you said, the cure for adeno is a hysterectomy; however, some other ladies are looking into other options like only having the adeno removed (there's a thread on this board about it, but not sure about the effectiveness or ability of many doctors in this area as it sounds new).

I had adeno and I can tell you it does more than just cause heavy periods. The only symptom I didn't have was painful sex, but I had horrible bleeding, pressure, lots of pain and an enlarged uterus. I also had fibroids, so some of that could have been due to the fibroids -- it's hard for me to know. The enlarged uterus put pressure on my bladder because prior to surgery, I often had to get up in the middle of the night to use the bathroom.

Adeno gets progressively worse so at some point, you'll have to make a decision. My doctor put me on the pill, which did nothing. I couldn't do an IUD because I'd had an ablation (I didn't want one anyway so that was good). I'm glad I didn't take options to only treat my fibroids because they wouldn't have worked. I wasn't diagnosed with adeno until post-surgery but I suspected I had it.

My advice is to continue getting opinions and really look into seeing if there's a doctor who can actually only remove the adeno tissue. As I said, it sounds relatively new so I'm not sure how effective that would be or how many doctors even do that. See if you may have endometriosis as suggested, even if you have to visit another doctor to do it (I can understand you not wanting to visit that GYN again since she was so dismissive). You can then try the IUD or pill if you feel comfortable with that and see if they work, but if not, honestly, there's not a whole lot of options out there for successfully dealing with adeno.

Best of luck!

I certainly understand the need to moan. Please seek additional opinions. It sounds as if you have good communication/understanding with your GP and not so much with the GYN, so ask your GP if there is a GYN that specializes in pelvic pain that he could refer you to for an additional opinion...this has made a huge difference in the confidence I have with my doctor.

I too started experiencing this pain in my mid thirties and hid it/sucked up until this year before finally seeking help (6-7 years later). Explained everything to first GYN and was put on BC pills, internal & external ultrasounds were ordered as well as catscan and no mention of potential adeno...in fact was told they couldn't see anything (cried when I heard that). Pills exacerbated problem as they contained estrogen. Pain episodes came 6-9 times a day for 4 months lasting 20-60 minutes each. Gyn passed me off to pelvic floor specialist and a pelvic pain specialist after 4 months of torture on BC.

Since no probs w/pelvic floor I am now seeing pelvic pain specialist. At my first visit, she suspected adeno based on catscan from 1st GYN (who said they couldn't find anything), reaction to BC containing estrogen, and litany of symptoms. At first visit she offered Mirena and a pain psych (that's another story). I had Mirena put in that day and she ended the pills. Pain went away w/in 3 days. 2 months of spotting was annoying, but pain was gone! At 6 weeks of Mirena, pain is beginning to return. DR wants me to keep Mirena just 1 more month.

At next visit she will remove and then give a 3 month injection of Lupron. Skipping depo-provera because I am adamant about no more BC after my first experience even though it doesn't contain estrogen. I believe Lupron is the last step prior to getting to surgery. This has been an 8 month process. I too am told I am "young" for hyst (I'm 44...give me a break!) I think the ultimate for DRs is to try as many avenues as possible to hopefully put off hyst & allow us to enter natural meno, but many of us just can't get there. It's got to be about quality of life too. Best wishes to you!