brtb
New Member
Posts: 23
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Post by brtb on Feb 24, 2013 0:08:42 GMT -5
Hi all,
I have a couple of questions. First of all, I had a lap exactly one year ago tomorrow. Diagosed with severe Stage IV endo (organs fused together). I had a 7 cm endometrioma excised from my left ovary and had adhesions cleaned up. However, at that time last year an ultrasound showed two 3 cm endometriomas on my right ovary. The surgeon couldn't get to them during the lap because everything was so fused together. She did the best she could.
Overall, one year later, I'm feeling great. No pain, no tummy issues, no lower back pain, bloating, etc.
I'm currently on CD 13 and I've been having pain on my right side and especially during sex. Today I noticed brown discharge, more than just spotting, almost like a light period. I've gone through 5 pantyliners today. So, I'm wondering if it's the endometriomas that I have on my right ovary leaking.
I'm 36 years old, not on BCP, and DH and I are not pursuing treatment (IVF is the only option for us). The only reason I'm not on BCP is because I just didn't want to deal with it. I used to be on Estrostep FE for many years and actually liked it.
My questions are, are any of you on BCP to manage endo? I'm seriously reconsidering going back on the pill. Pros, cons?
Of course, I want to avoid another lap. It was a nightmare for me, personally. In the hospital for 3 days, 2 blood transfusions. Would you consider having another lap with these symptoms?
I would love any thoughts you might have on going back on BCP, or even any natural remedies to manage endo.
Thanks!
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Post by semicolon on Feb 24, 2013 9:10:01 GMT -5
The research shows that ovarian endo is the hardest to get rid of unfortunately, even with excision as it has a higher recurrence than endo excised elsewhere which has almost no recurrence if excised completely. Generally, if an endometrioma is leaking it is inside the pelvic cavity and would not show up as vaginal bleeding. But endo on the ovaries can throw off your hormones and the balance of estrogen & progesterone, which can definitely cause spotting and bleeding. I haven't been on BC in a long time, there is a thread on it here somewhere, and I'm sure some others will chime in. It sounds like you have been doing well, how bad are these symptoms for you? How have your periods been?
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Post by willow82 on Feb 24, 2013 10:43:59 GMT -5
My issue with BCP was the estrogen in the pills drove my endometriosis crazy. Not everyone has this problem, but I would be wary of high dose estrogen pills.
If things are going well you may just want to do nothing medically. However, for the future it might be a good idea to find an endometriosis specialist. That way if you do need BC, Lupron, lap, etc you're with someone who gets the in's and out's of these treatments with endo, which can be tricky. Not only does endometriosis respond differently at times to treatments than a woman without endo, those of us with the disease have a wide variance of results.
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brtb
New Member
Posts: 23
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Post by brtb on Feb 24, 2013 11:11:15 GMT -5
Before my lap I used to be on Estrostep FE which is a low dose, triphasic BCP. It really helped with the pain.
Right now my only annoyances are pain with sex, which has just reoccurred after one year and now this brown discharge. I also really have no interest in sex at all, so I don't know if that's another hormonal thing or what. My period isn't too bad. CD 1 is my heaviest flow day and then it tapers off by CD 3. No cramps like I used to have. I can get by with two Advil in the morning of CD 1 and I'm fine. No lower back pain and I used to have this awful pain that radiated down my legs. My cycles run anywhere from 24-28 days, but they are mostly getting shorter.
I've also been reading a lot on taking Omega 3s. Does anyone have more info on that, or could you point me to a thread?
Thank you so much for replying. I posted something on another board and haven't gotten any replies back yet. Thanks for the support.
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Post by semicolon on Feb 24, 2013 20:27:44 GMT -5
That is a big improvement, but I'm sorry about the pain with sex. Did you have any endo excised from the rectum or behind the uterus? The cul de sac is a common spot for endo, I'm wondering if since everything was so stuck together it was hard to get there to clean it out. It sounds like your doc did the best she could, but might not have been prepared for the amount of endo you had. I think the lack of sex drive could be hormone related, and that might go along with the spotting. I don't have any thoughts on the omega 3, sorry!
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Post by nibletz on Feb 25, 2013 7:25:24 GMT -5
Hi looks like you had it bad....
I get the discharge too but was told by an old gynae its just the mirena coil but am seeing a new one on friday so will see what they say.... Sex drive like semicolon said could be hormones thats quite likely but as said previously with all symptoms find an endo specialist as they will know ins and outs of treatments and options....pains I get too but I think its be wise my bowel and ovary have fused back together they separated it during lap but I read it's back to normal
Its worth seeing a specialist and go with all symptoms you have medical history if you have it so they know what to look at and also quicker resolving time
Wish you luck and answers let us know how it goes xxx
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brtb
New Member
Posts: 23
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Post by brtb on Feb 25, 2013 8:41:59 GMT -5
Semicolon: You are right on. We/dr knew that I had a large endometrioma that needed to be removed just by the pelvic ultrasound. She knew it was going to be bad, but none of us were prepared for how bad it really was in there. I didn't have an endo excised from the recum/uterus area. She wanted to do something with the bowels, but I was already under, and my husband didn't want to make that decision for me, so we didn't do that. My bowels and my pelvic organs are all fused together. The ironic part is that my uterus is in perfect condition.
I think another thing that's adding to my stress is that my husband wants sex all of the time, and I don't. I feel like he doesn't get it. That's also making me cranky on top of how I'm feeling. I'm tired and frustrated. Although, I don't want to sound ungrateful for how much was accomplished during my lap. I know other women are suffering much worse.
I'm going to research acupuncture and some other things, but in the mean time put in a call to my surgeon (she's an endo specialist in the DC area).
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