Adenomyosis - surgery not an option

I am 51 years and old and was diagnosed with adenomyosis in 2006. I couldn't get surgery then, and can't get it now because I am a single mom and my daughter is not yet driving. I live in the mountains and don't have any neighbors who can help either.

My periods have started to come closer together. Every 21 days instead of 28. The pain is awful. The bleeding is awful. I just got some pain meds and they don't touch it. I thought menopause was close, but I bet I am a few years away.

Questions:

Has anything changed in treatments since 2006?

What kind of hysterectomy is recommended with adeno? What parts do they leave if any?

Has the procedure of a hysterectomy gotten any better? What is the recovery time?

Are there any alternative treatments I don't know about? Something about a directed ultrasound procedure not available in the US?

This is just a sucky thing to live with. Not happy, but don't have many options.

I feel stuck, bummed, and in pain.

Looking forward to your comments.

Thank you!

Sorry to hear things are progressively getting bad, but I completely understand. I am new to this site, but see that you have been a member for quite a while.

I found the "Hysterectomy" drop down menu at the top of the site to be extremely informative about types of hysterectomy, but the method and what to remove would be a decision my your doctor.

Would you please share what treatments your doctor has had you try since your 2006 diagnosis? Also, have you been back to the doctor to recently to for ultrasounds, CT, or MRI current assessment?

My doctor was in Oregon and I have since moved. I haven't has any additional testing as I was without insurance for some time and haven't done anything as far as treatments.

It's definitely a grin and bear it kind if existence, but with a period every 21 days now I'm starting to look into options again.

From everything I have read, and what my course of treatment has been for the past 8 months, it seems as though doctors what to try buying time to see if various treatments can get those of us with this diagnosis to menopause so that a hysterectomy does not have to be performed.

If you do have insurance now, I would first suggest seeing a doctor for reassessment. Depending on the exam results & tests, the following seem to be the treatments (and the order they occur in for the most part on my experience):

1. Birth Control Pills (not containing estrogen - adenomyosis feeds on estrogen & makes the pain even worse if you can imagine that!) Generally this is tried for 3-4 months & the placebo row is not taken, thus no period.
2. Mirena IUD (commonly tried after the BC pills). Again this is tried for at least 3 months and I have read many success stories with this. Again, no periods, but probably pesky spotting for a few months. There is moderate pain with the insertion, but they say if you have given birth it isn't as bad as what those who have never given birth experience. I did it with no pain meds & never had children and was fine in a day or two.
3. Depo-Provera injections. Another form of BC.
4. Lupron injection. No period and chemically puts you into menopause for a few months, shrinks uterus and fibroids prior to surgery.
5. Surgery

Also, I have read of many who have had ablation to reduce/stop bleeding. Bleeding isn't a problem with my adeno, just pain, so I have no insight to share on it other than from what I have read, it does nothing for the pain we suffer from...just eliminates bleeding.

Lastly, surgery may be a suggestion by a doctor earlier rather than later if fibroids, cysts, etc. are detected thru testing.

Hope this helps and you find a doctor that can try and give you some relief soon.

Thank you so much for such a thoughtful and thorough reply.

Looks like it's time to get a handle on my health again.

I really need to get some answers to my questions about menopause as well.

I really appreciate you taking the time to reply.

Looks like you went with an IUD.
Is that working for you? What do you think your future might hold as far as treatments?

Wishing you the very best.

9 weeks ago, I had a hysterectomy for adenomyosis. I'm 53, and I've had symptoms for 6 years. Like you, my periods came closer together, and the pain was terrible. I finally had a period that wouldn't stop, and the pain was debilitating. I had to finally do it.

My doctor first put me back on BC pills to slow down the bleeding. Didn't help. Had me double up on the pills, going through 2 packs in a month. Nada.

Because the tissue just keeps growing and growing, there is unfortunately nothing that can be done, because nothing can fit in there. IUD, Mirena, etc. Even ablation isn't an option, because the uterus becomes one large ball of dense tissue.

I had a LSH. Kept my ovaries and cervix. Had a 4" bikini cut incision, as uterus was (my doctor's words), "impressive". 20-week pregnancy size. From the MRI, it looked like a basketball.

Woke up from surgery feeling better than I had felt in years. Hospital one night, walked straight up 2 flights of stairs, into the shower, and had visitors over for dinner the first night home. Very uneventful recovery. Other than the "no driving for 2 weeks" rule, was able to completely care for myself (I live alone).

Summer2015 thank you for your reply. I am so happy that your recovery is going so well!

	Quote:
Originally Posted by Althearose Looks like you went with an IUD. Is that working for you? What do you think your future might hold as far as treatments?

I was hoping the IUD would be the answer for a while since the BC pills didn't do it; however, I think I am the unusual case where the IUD didn't buy me much time at all. The excruciating adeno pain I experienced everyday, multiple times a day for the previous 3-4 months as a result of the BC pills was GONE within 2 days after I got Mirena (prior to BC pills & Mirena, I only had that debilitating pain for 3-10 days a month prior to & including the days of my period...as if that is acceptable).

After only 6-7 weeks with Mirena, the pain is back. Again occurring multiple times a day for 6+ days prior to a period, even though the period never starts due to the IUD. But I can calendar it and the pain returned 28 days after it started a month ago and I am expecting it to happen again in a week or two.

You asked about future treatments I am expecting...My doctor wanted me to keep the IUD for a 4th month, but will be removing it at my next visit. Depo-Provera was suggested next, but I freaked out at the idea of more BC after my terrible experience with BC pills (DR prior to current DR gave me BC w/estrogen, never suspecting adeno resulting in the WORST 3-4 months of my life). I will be getting a one-time 3 month injection of Lupron. Based on my last appt, it is my understanding that if my pain goes away with Lupron, then it is an indicator for surgery. I am not looking forward to the 2 week hormone surge with Lupron (fearing pain episodes) or the menopause symptoms, but I am anxious to take the next step to remedy this problem.

Find a doctor you are comfortable with & really listens to you...it has made all the difference for me and my trust in my choice of doctor.
Best of luck to you.

Best of luck to you too!

finding a doctor - you can check those listed here - see tab far right above - and see if any are listed in your area. Driving - I had the robotic and was driving within the week. Doctor said as long as not on narcotics and I felt like it, I could drive. I will say I never had to put the brake on suddenly (thank goodness) but I would hurt in my right pelvic area just from using those muscles.