ENDO Messages for April, 2001: hello angels: my intro and your wisdom sought!

hello angels: my intro and your wisdom sought!

From: Cindy (anonymous@obgyn.net)
Sat Apr 28 14:09:54 2001

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Hi all,

I've recently been diagnosed and am looking for your wisdom! Who am I: 36, married, two kids (we're done!), personal history of kidney stones and ovarian cysts (before kids, then took birth control pills for about 8 years to help control this; after kids tried the bcp again but didn't like the emotional roller coaster, so went to an IUD, then hubby had the big V), family history of breast cancer.

During a recent visit to the ob/gyn, I described some symptoms to my doc, and in conjunction with the exam she recommended an ultrasound. We both suspected an ovarian cyst. The ultrasound revealed a 4cm x 4cm complex cyst on the right ovary, mild uterine enlargement and a small fibroid (1.3 cm). The doc scheduled a laparoscopy because she also thought there may be some endometriosis involved. The plan for surgery was to remove the right ovary and cyst and confirm the presence of endometriosis. Once the lap began, the doc found advanced endo, and she could not proceed to remove the cyst and ovary as evidently everything is fused together and she felt she could not perform the procedure. She could only see a very small part of the cyst, as it and the ovary were completely covered by the endo. As we had not anticipated this severe of a complication, she did not convert to a laparotomy or other procedure. So my 2 hour procedure ended up being about 25 minutes. Fortunately my recovery from the lap has been uneventful and smooth except for nausea after the lap. In speaking with my husband after the surgery, the doc showed him photos of the endo and explained why she was unable to remove the cyst. Hopefully she now has thorough information and documentation of how extensive the endo is. My post op appointment is next week.

Sharp pain has been present only during my period, for days 1-2, but that happened only in the past year for about 5 months and the last two months this crippling pain has subsided and I am merely miserable the first few days...Otherwise I simply have a dull throb in the right side and lower back, and a seemingly constant bloating in the week leading up to my period. I swear I change pant sizes between the first two weeks of my cycle and the last two weeks!

I am in the process of arming myself with as much information as possible. I don't know how experienced my doc is with treating endometriosis - I'll find out next week. I hope to find out just how "fused together" everything is, and exactly what "everything" involves.

My questions for you so far: 1. Given a family history of cancer, what are the implications of hormonal treatment? If we were to try and control the endo until menopause, what would/could 10+ years of hormonal treatment implicate for me? Would alternative treatments offer benefits?

2. Surgical options - obviously it has become clear from my reading that there is no cure for endo. I am not too fond of going on a surgical merry-go-round. I have read the accounts of endo reoccurring after surgery, and the scarring/adhesions that can develop from multiple surgeries. However I don't think I am going to have many choices at this point given the severity of the endo....I think some sort of surgery is indeed in my future. At this point I'm not adverse to hysterectomy - we are done with kids and if these organs are giving me more grief and potential problems than benefits, well then.... With a triple whammy of cysts, endo and now a fibroid -what next?!

3. Endo specialists in mid-Michigan (greater Lansing area, or Grand Rapids, Detroit) - do you know of any?

4. Given your experiences and my description, what do you think of my situation and thinking at this point? I am especially concerned of that cyst just sitting there.....

I'll be asking my family doctor as well as my ob/gyn these questions too....thanks for your support and input! I am so glad I found this forum! Reading your posts has been quite a process of relief - I identify with so much of what many of you are saying! And your wisdom from experience is wonderful! I also look forward to the support of you angels as I travel along this journey.... and of course, my support will be with you as well!

Thanks!

-- -------

Cindy K

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