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Avatar universal

Finally went to a pelvic pain specialist for my issues

Brief history- I am 41, been dealing with painful periods and a couple other issues since late 20s. Been off birth control for almost 4 years as Ive been trying to conceive and my issues are gradually getting wierder and I've been having very dark spotting on and off since my laproscopy in Dec. My first lap in 2011 offered some relief and I conceived twice (miscarried) .After second lap in Dec 2013 is when these issues started and actually got worst!  I've had constant right side pelvic pain and dark, gooey spotting. My current gyn, who did not do the lap, reviewed my records and said I had a good amount of endo removed, a couple of cysts drained, but he is baffled as to where the dark blood is coming from and he thinks my right ovary may need to come out, and agreed that a pelvic pain specialist would be the one to see. I actually switched gyns for a while and another gyn did my lap in Dec, who is supposed to be fairly good and competent, but I've decided to return to my old GYN. I know, wierd.  So I went to St Joseph's Hosp here where they have a Pelvic Pain office and I saw a specialist. She looked at my records from my last LAP and asked me alot of questions. I emphasized the pelvic pain coming from the right side that is intermittent, bothers me when I sleep, and the very dark spotting I had for a while and the goofy periods. She says most gyns just 'burn' the endo off, they do not cut it out (excise) and it can reoccur, etc. She thinks the endo around my ovary has returned and right now doesnt think my ovary is the issue. She did a digital exam- no pain, just tenderness when she pressed on my right side, I have no pain during sex or using restroom,  and she wants me to stay on the pill and I am to return in 90 days. If the pain persists or gets worst, she's going to go in there and look around.

Also my period was due July 5- I have had lots of very dark purplish, brownish spotting, pretty bad cramps over the weekend but no flow. I wish my flow would get here and be done with it. I dont know if this is typical with endo but since my Lap in Dec, things have been very wierd and concerning. Pelvic Pain specialist was a little surprised the lap in Dec offered no relief at all. So that's whats up. I am done using my own eggs and when money becomes available, I will be using donor eggs or embryos and the specialist knows I do not want my parts removed so all treatment is being done with that in mind. She is not a fan of removing anything unless absolutely necessary and this is very premature and we can't make any treatment decisions until I return in 90 days and she has a better idea of what she needs to do. Ugh. So frustrating.
6 Responses
136956 tn?1425609872
Well what it sounds like is that your in good hands and the reason I say that is that there are limited amounts of Endo specialist that actually excise endo and that is the gold standard method. He/She is right when she told you it probably wasn't removed from the root just the surface.

The old blood is most likely from a cysts and this is normal. I would do the 3 months on the BCP like she has said and after that I would recommend another lap to make sure its cut out but the ovary does not have to be removed unless there is so much damage in which a good surgeon will do his/her best to conserve the ovary.

I understand your frustration. I do a lot of Endosisters struggling with infertility that can probably help you out. They are available on twitter and facebook and I know one in particular that I think she could help you out with all the ins and outs of fertility and all that stuff.

Let me know if you are interested
Avatar universal
Well i wish they knew for sure why I am still spotting dark blood- I have had lots of cysts drained, and had them rupture and never had this before. The Specialist didn't have an answer. I just think it's something that is going to require exploratory surgery to solve, I don't know. It's been 6 months since my lap and the dark blood has been coming and going. The fact my period is rarely on time anymore also bugs me, and right now it's teasing me, and I've been spotting for several days and no period yet. I think this happened the last couple of cycles. I asked by gyn about doing a D & C since I've heard that can help clean out 'the gunk' and he said that was a possibility but we're going to hold off doing anything right now. Ok, thank you for your answer.
136956 tn?1425609872
Let me ask around and get back to you. I am going to see if any other Endosisters have experienced it and see what they have to say. Give me a day :)
136956 tn?1425609872
This was a question I was asked.

"Question: Is she referring to Dr. Desai in phoenix? If so... It seems to be that their office like to rule out other pelvic pain issues before endo if past surgeries exist. I know this because I see her colleagues"
Avatar universal
Yes it is Dr Desai. She really didn't have a diagnosis for me and they're taking a wait and see approach. She did not have an explanation to the intermittent dark spotting either. Today I have no pain, no spotting and no period!!! I'm off the colored BC pills waiting for flow to come and it's over a week late, despite bad cramping last weekend. No one seems to know what's going on. I may call my regular gyn and see what I should do.
136956 tn?1425609872
I am not sure what to say that being persistent may help. Let me know how it goes
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