Help me decide

A funny thing happens to your body when you have endometriosis. When you have endometriosis and have a lot of surgeries (6 in 3 years), you develop scar tissue and adhesions. These can cause pain and suffering as well as endometriosis lesions.
Since I’ve had so many surgeries in a short period of time, I tend to form scar tissue very quickly and easily. My first excision surgery was mostly spent cutting through scar tissue and adhesions to get to my cyst and to the endometriosis on my pelvic girdle and everywhere else. Until there’s a way to prevent scar tissue and adhesions from forming, it will keep happening. I need to look into the physical therapy for adhesions.
Now, I know one person on my dad’s side of the family has endometriosis. My mom had heavy periods and had a hard time getting pregnant with me. Her mother, was always in pain but I don’t know if it was Endo related because no one spoke about such things. My aunt was visiting last year and she mentioned she had “adhesion disease”. Maybe they just didn’t have a name for it and she still had two children. So, from that information, it seems it’s on both sides of my family. And it’s no wonder I got screwed!
I went to my doctor this morning to follow up on the cyst that the CT Scan reported, with an ultrasound, including Mr.Wand! Dr.K came in, looking very concerned and asked me my symptoms and jumped right in to look at my right side.
His first comment was how good my uterus looks (thank you Lauren Matzen, acupuncturist extraordinaire).
My ovary is fine! Normal looking ovary. There is most likely no cyst there. There was a small pouch of fluid that was there in July, caused by scar tissue making a pocket for fluid to get trapped in. That’s still about the same size, but now there’s a lower half, separated by scar tissue/adhesions. That part may be blood filled or maybe a chocolate cyst. Either way, it’s obvious that the scar tissue and adhesions have begun to invade my bowels and probably my bladder. Dr. K says that the fluid is coming from my ovary. Every month when I ovulate it releases the egg and the fluid that formed with it. Normally, your body would absorb it, mine catches it! He also thinks my bowels are stuck again. While I’m relieved that it’s not a cyst, I still need surgery. I’ll get back to that in a minute.
Here are my options as they were presented to my husband and I:
1. Find a very skilled radiologist who can do a ultrasound guided needle aspiration (where they stick a needle up my who-ha and hopefully miss my bowels and suck out the fluid). Then go on birth control pill to stop me from ovulating, thus, preventing more fluid from forming again.
2. Have another laparoscopy to remove the adhesions and any endometriosis he finds along with removing the pouch of Melanie. Then go on the birth control pill.
3. Another laparoscopy to do all of the above and to remove my right ovary, keeping my left one (which doesn’t work much if at all) to provide some estrogen.
Before anything else, I have to tell you about my genetics. Yes, I have more issues.
The birth control pill, even low dose, is probably contraindicated in my case. I have one of each of the mutations for MTHFR, which can cause blood clots, heart attack or stroke. I actually have to have my homocysteine level checked again. I also have the anti-cardiolipin antibody, which can lead to thrombosis, aka blood clots, too. Oh yea, I guess it’s about time to head back to the hematologist again. Dr. K also agrees that the pill is not a good idea for me.
So my real choice is whether or not to remove my ovary and if I should have surgery NEXT WEEK! ???
Yes, they can squeeze me in. My favorite anesthesiologist IS working that day, I already have the bowel prep (have a colonoscopy scheduled that day anyway) and I already have vacation planned until Christmas. Not to mention, if I do it next week, I don’t have to worry about my deductibles which will go back to $0 on January 1st!
Decisions!!!
Here’s where, if you actually read to the end, I ask for advice! Thank you.

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About our last embryo

I have Endometriosis, Adenomyosis and Hashimoto's Thyroiditis. I've had Lyme, Bell's Palsy and the Shingles before I was 25. I've done IVF twice, with and without immunosuppression and FET. I am married to my best friend and I am Infertile.
This entry was posted in acupuncture, adenomyosis, Endometriosis, endometriosis awareness, endometriosis diet, excision surgery for endometriosis, hope and love, IBS, infertility, invisible illness, laparoscopy and tagged , , , , , . Bookmark the permalink.

4 Responses to Help me decide

  1. rosiedd78 says:

    I almost think the sooner, the better. Less time to fret about it and worry about the risks. It’s important to take care of your body for the long term. Tough decisions though… Good luck!

  2. Hi darlin. If I was in your shoes, I would remove my ovary. It seems like the approach that in the long run will be best for you. My surgeon left me with one ovary for the estrogen, and I feel really good. I know it’s a lot to think about/weight in such a short time. I know you’ll find the right answer. Wishing you the best…. Jillian

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