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Adenomyosis Support

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Hysterectomy the only answer?? [May. 21st, 2012|05:18 pm]
Adenomyosis Support
Hello Everyone!
I am very happy to find this group, and know there are many out there that understand what I am going through.. I have also suffered with severe pain. I have never had a "normal" period. irregular and heavy since childhood. My obgyn told my mother that it was very doubtful I would ever have children due to the fact even with medications and birth control pills we were never able to regulate my cycle or control pain. As a young woman I remember having cramping so bad I thought I might die.. Heating pad and pain meds helped, but not completely. As I got older, the problems did not go away. I was able to conceive and have 4 beautiful children over the years, but no Dr could ever tell me why my cycle was so messed up, why I bled so long and so heavy, and why the pain never went away and no matter what we tried, nothing helped. This last year (2011) I finally had enough. A friend of mine had had an "ablation" and she LOVED it.. No problems, no periods, nothing. I was skeptical, but knew I could not take anymore of this. At 38, I knew I would not have any more children so an ablation would be fabulous. After speaking with my Dr (who actually recommended a hysterectomy first before agreeing to talk about ablation) I decided that it was what I wanted. My Dr could not do this procedure, so I was referred to a specialist in my area.. He went over all my information, spoke to me at length about the procedure and made sure I was aware of everything. I decided this was what I wanted, instead of a hysterectomy which required so much recovery time.  I had my ablation. The first few days were painful, but not worse than I had had during some of my "bad" cycles. After a healing time of about 9 weeks, there was no more bleeding or discharge, and most wonderful of all - NO pain!!. For 11 months I did fantastic. Then out of the blue - Horrible pain.. I thought it might have been stress induced as I had been going through a horrible time with my son being very ill and needing several surgeries. I waited it out a couple days, but the pain did not go away. It did lessen, but I felt like I was in early stages labor. I also had some spotting, and felt like I had to go to the bathroom constantly. I was worried that something was horribly wrong.. Infection, tubal pregnancy (this can still happen, just very very rare according to my Dr), anything.. Once I was seen by my Dr, he did all the normal tests for bladder infection, ect ect.. We even did a biopsy to check for unseen issues as he thought my uterus "felt" abnormal. He then sent me off to have an ultrasound. Once all the tests came back, I was once again asked to see a specialist. Once there, I was informed that I had Adenomyosis and several cysts in my uterus. They had told me a few years ago that I had fibroids, but the Dr said "no, they are cysts." and apparently the spotting and severe pain was from one of the cysts bursting. After a long visit with the specialist, and another round of exams and other tests, he told me of my options. He did say birth control may help, "but with your history of issues and the fact that it did not help before suggests it will not help this time either." He also said I could try lupron, but that he felt it would only offer temporary relief. he went over all my options and said that although some of them may help, only hysterectomy will provide the "cure" for this unless I could make it until menopause then most, if not all, of the symptoms "should" go away. But if I am anything like my mother and grandmother, that will not happen until I am well into my 60's.. Not sure I can take 20+ more years of this.. after weeks of taking medications I am getting to the point that a hysterectomy may not be such a bad option. Is there anything anyone has tried that helped them get through the day to day pain? I have to work, and taking the time off for the hysterectomy is going to be very difficult. After discussing it with my husband, we have started trying to set aside the money to get us through the 8 weeks I will have to be off work, but I do not think we will be able to do this for some time. I have been on the net scouring for information and reading articles about anything dealing with adenomyosis, but I feel that if anyone would have a good understanding of what I am going through and what could possibly help me with this would be other women that are or have experienced it.
Thank you for any help or information you have. And thank you for sharing your stories with the rest of us. After reading several I no longer feel all alone in this horrible place that no one can understand (my poor husband tries, but I think he thinks I exaggerate the pain..)

[User Picture]From: ashbyyokosuka1
2012-05-22 12:53 am (UTC)

why do you have to have an abdominal hyst?!
(8 wk off wk)

is there a way to get a laproscopic hyst? or even better a DaVinci Hyst?


i just had one for adnomyosis late Jan. (i also have/ had) endo (but hyster is NOT a cure for endo)
i don't work, so that wasn't a problem
but recovery was v. fast and after 6 wk dr appt., i was out running again (granted much slower)

also, i personally am against lupron (my dr suggested i get on it after my hyster to ensure that endo was treated, but it CAN come back if it is outside my uterus) and lupron is just a KILLER of good things, as well as bad -- too many risks (for me).

there is a site called "hyster sisters" it is INVALUABLE for questions/ concerns & u will probably get a lot more responses to questions.

i just want to say
i was VERY hesitant having my hyster. (& i have been dealing w/ this for the past 9 years-- i was on birth control for awhile, but then too much break through bleeding so i finally got off it it) & NOW, i am SO happy that i had it, i can't believe i didn't do it sooner...

i had an LSH (kept my cervixs & ovaries) i was V. scared of going in to early menopause, even tho' i was keeping my ovaries, i was still scared--
but i have bounced back--
i did the first 3 pds. have a fair amount of ovulation pain, but that is bc it was still healing --
sex is the same etc etc

i know there is a lot of fear of hyster
but for ME it was the best decision --
please ask if you have more questions or i can expound on something more :-)
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[User Picture]From: zebra_bunny
2012-05-22 03:53 am (UTC)
My mom and I both went on the Mirena (IUD that releases hormones). For me I had no periods for the first couple of years or so and then it changed to being very light periods and pretty much pain free. When it was nearing the 5 year mark I started to get slightly painful periods again. I switched to birth control pills for a while and the periods were a bit more painful, but not as bad as without anything and then I went off to conceive our first baby (luckily I only had one or two cycles before we conceived). I have another Mirena now and I haven't had a period yet, but that apparently could also be due to breast feeding.

There are some options out there, but not all doctors know about them. Good luck in your search and finding what's right for you.
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2014-03-25 06:57 am (UTC)
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