New here: any endo gals around?

[knitter4democracy]

I hadn't checked out this group for some reason, but it looks like my kind of place.

I'm an internist's wife with endometriosis and all of the attendant fun that is. I was mostly controlled with diet, stress management, and ibuprofen for years, but I got another ovarian cyst last February, and I've been in daily pain since. It's been slowly letting up since the thing burst at the end of June, but it's still there.

I was going to open up a yarn shop this fall but had to put it off indefinitely because of my pain. My kids are still young (I was lucky to have them, and they're three and five), and my hubby works amazingly long hours, so it was going to be stressful for our family anyway. Still, it's hard to see that dream get deferred again.

Everything I went through last spring and summer ended up being pointless. I saw a specialist who wanted me to get a Mirena, finally found a good Ob/Gyn I could trust to do it, ended up getting it taken out due to bad reaction (loss of appetite, weight gain, major hair loss, personality changes, and hardly any pain relief--in fact, pain was much worse for awhile).

Oh, and did I mention the ultrasound tech who abused me during an endovaginal ultrasound to see what the cyst was doing? Yeah, that started a whole other round of issues with police statements, dealing with the asshole head of the practice (blamed me for not stopping the procedure), and getting therapy after finding out that radiology techs are not licensed by the state at all and that I couldn't sue for malpractice or anything. I just love tort reform. *sigh*

So, anyone else out there have any ideas on how to deal with this?

[fudge stripe cookays]

1. Yikes!

Well, I had a chocolate ovary back in March (ovarian cyst that ruptured and bled out into the abdomen), but they took the whole ovary out because it was that nasty. They had to rush me into emergency surgery because I was in such bad shape.

Could you go that route? It would remove the source of the problem. at least on one side.

My doctor put me on a really high dose birth control pill (OvCon) to shut down my other ovary, but since I got diagnosed with MS, the co-pays for that are $25 or so. I got laid off in September, so right now I'm risking it. Treating the MS is more important. If we have to, I guess the other ovary will come out if it has to.

You might want to ask about the OvCon since you couldn't handle the Mirena.

Good luck!
fsc

[knitter4democracy]

2. Thanks!

I was first put on low dose BC for my endo, and that did a serious job on my personality (let's just saying raging B**** comes close to describing how I was on the pill), so the Mirena was already a chance. Apparently, my body really, really hates synthetic hormones. *sigh*

Surgery looks to be my next option. My right ovary always seems to be the one that gets cysts, so I'm fine with that one coming out with maybe a little clean-up of any lesions or scar tissue. I just don't want to get started on the surgery cycle, as they tend not to have a good success rate long-term.

MS is a seriously nasty disease. I'm so sorry you are fighting that, too. Treating that is much more important, you're right. If only we had a national health care plan . . . *bigger sigh* It really would help so many of us. Take care of yourself.

[fudge stripe cookays]

3. Thanks!

You too.

Endometriosis is serious stuff. I had it for I don't know how long and didn't even know it! We gotta take care of ourselves!

fsc

[knitter4democracy]

4. That's the truth.

Have you joined the Endo Association? I finally did, and while I don't get a whole lot out of it, the newsletter helps me feel not so alone in all this.

[fudge stripe cookays]

5. Hmmm..

I didn't know there was one. I'll have to check into it!

[REP]

6. Menorrhagia and Cystic Ovaries

For the cystic ovaries, I just manage the pain with narcotics*; I've been sterilized twice so I like to think the cysts are my third back-up measure. I have them monitored; if they get over a certain size, an oophrectomy is to be considered due to the risk of torsion, but mine usually rupture before they get to the required size. Oddest thing was that I developed the cysts while on Depo-Provera, which is used to *prevent* cysts.

My menorrhagia wasn't caused by endometriosis but was treated the same way - by endometrial ablation. Since I'm nullliparous and my uterus is too small for the at-the-time new NovaSure technique, I had a hydrothermal ablation, which is just what it sounds like - boiling saline searing out the endometrium. It was done under general anesthesia, and recovery wasn't nearly as bad as it sounds like it would be from the description of the procedure! Best of all, I rarely ever have periods, and when I do, they are very light and last just a day or two (instead of weeks and causing anemia). Though I had it done primarily to correct the mennorhagia, it was also my second sterilization; without an endometrium, pregnancy is not bloody (ha!) likely even if an egg does make it past the charred remains of my fallopian tubes.

*I'm a kidney patient, and can't take any other class of painkillers.