new - adenomysosis, surgery 12-18, children mentioned

Hi everyone,

I've been lurking for a few weeks, finally registered last week, I think - time is a bit fluid for me at the moment. I've really appreciated this resource and all your stories!

My story - I've had heavy, painful periods since I started menstruating at age 14. (throwing up was not unknown due to the severity of the cramps). I'm 43, I've been married 23 years (24th anniversary is in Jan) and have 7 children, four of whom are now adults.

There never was any sign of endometriosis or tumors when I've had ultrasounds. I was also very fertile (and wished with all my heart to more evenly divide that gift with my sisters who had fertility problems) and nothing but an IUD after the first 4 in 4 1/2 years prevented pregnancy, and then 3 more in 17 months (pregnancies fraught with multiple problems, bed rest the entire time, and premature deliveries) led to a tubal ligation 8 years ago.

2 years ago I bled 3 months straight. Ultrasound showed an enlarged uterus, only one simple cyst on one ovary, but my hypothyroidism was uncontrolled (diagnosed in 1987) so that was dealt with first. That took nearly a year to regulate, during which time I also began treatment for Psoriatic Arthritis (PsA) (auto immune disorder similar in some ways to Rheumatoid Arthritis or Lupus or even Fibromyalgia). The bleeding returned to a relatively normal 7 days, but remained heavy and painful most of those days.

Then in June of 08 I began to bleed heavily for 2-3 weeks out of every month, and spotted the rest. I waited three months and tracked the days on a calendar, hoping it was temporary and would work itself out. The cramping and pain was as bad as ever. Ibuprofen an a heating pad were my best friends.

With the PsA treatment I had to have blood tests every 2 months. In September, my Rheumatologist noted that besides being anemic, I had lost 20% of my blood volume since my last blood test. I had an appointment the next day with my GP, who put me on birth control pills that are supposed to prevent any period at all. I spotted for 2 weeks, then bled for 2 1/2 more weeks, at which time I went back to my GP who referred me to a GYN.

The GYN I'm with has my complete trust. Awesome guy. Via ultrasound and physical exam and my symptoms, he suspects Adenomyosis - boggy uterus, enlarged (I had my year-old ultrasound results for him to compare the new one to, as well as my latest labs showing the anemia and blood loss), no cysts or sign of endometriosis, bleeding and pain. It's all there.

At my first appt, before the ultrasound, he immediately put me on a strong does of synthetic progesterone short term just to stop the bleeding, but he would not refill it. My blood pressure did increase a little bit on it, and i don't normally have high blood pressure, but the bleeding FINALLY stopped. I was on it for 26 days I think it was, and then had a 'normal' period, except for the excruciating pain.

My GYN offered an ablation, but said it was not likely to be effective due to the fact that my uterus is misshapen. Also, with adenomyosis there's no telling how deep the growth of tissue is into the muscle (as I understand it), and he did not feel at all confident he could accomplish healing for me that way. He also offered a hysterectomy.

The next step was a hysteroscopy which had already been scheduled at the time the ultrasound was scheduled. But after thinking about it for a day or two, and checking out this site for experiences of those with my same condition and the long term results of an ablation for adenomyosis, I realized there was no point in delaying the hysterectomy. My uterus had become "diseased" to use my GYN's words, I wasn't able to have more children anyway, and I have great insurance right now.

I called the office and asked the medical assistant to ask the doc if the outcome would be different as a result of the hysteroscopy, or does he already have enough information to justify a hysterectomy with my insurance? Next thing I knew, they'd scheduled the surgery! So I was happy.

The stress and, frankly, terror of this condition worsening, or coming back after an ablation, is too much for me. I'm an all or nothing kind of woman, so I'd rather just go for it, do the one thing that will heal this condition and give me my life back--it's been absolutely miserable, which I'm sure you can all relate to). I have asked the GYN to leave my ovaries if they are healthy because we don't have a family history of cancer, but we do have osteoperosis (my mom). But I've also told him that I leave the final judgment of that up to him, because I really trust him once he gets in there to know what will be best. He says they are clearly working fine given the regularity of my periods, so, we'll see.

I'm grateful for all the pre-op and post-op info on this site. I feel like I'm much more prepared for any eventuality, and expect a good outcome. After I'd seen him and had everything scheduled I found out he was the doc that did my friend's hysterectomy w/ ovary removal a few months ago, and I have never seen her look so healthy and happy and energetic as she does today!

This doc uses bio-identical HRT so if my ovaries are taken too, I am not terribly stressed over it. It's an easier thing to deal with than this bleeding and pain, that's for sure! Worthwhile trade-off, IMO, for me.

So, my surgery is Thursday this week, 7:30 am. Have to be there at 5:30 for all the checking in stuff. I'm excited to be having it, I can hardly stand the waiting! I have a support system already set up so I won't have to do a thing for at least 2 weeks, and longer if necessary. It's all working out just right. I'm extremely grateful for the chance to get well. I was going to say you have no idea! But in fact, everyone here knows EXACTLY what I mean :-) Thanks for being here.

Kathy F.
(Peaches-n-Pears)

Hi,

A very big welcome here! We're glad to have you. There is so much to be gained from this site. And if you sign up for upates, you'll receive tips and information via e-mail for where you're at in your recovery (and before.)

Take care,

Kara

Hi there, i wish you the best, it does sound like you have been on a long journey up to this point.

I read and re-read everything on this site, especially the hints/tips section.
My theory was better to be prepared for the worst, and you know what it really wasnt that bad, but I was ready for anything to pop up during my recovery.

Keep us posted on your trip to the castle!
xoxo

Hi Kathy, having the surgery this time of year with a houseful of kids speaks volumes on how bad you feel. I'm going on Jan 5th and people are saying well at least it won't affect the holidays. I would go right now if they called with a cancellation. I just pray I don't ruin the holidays for my family by being in severe pain. I know they are not going to want to leave me if I can't go to their cousins house with them.
Well good luck on thursday. You'll be ready to start a new year with a semi-new body!