I finally found one in November who takes me seriously and have been focusing on the pelvic/abdominal pain as that is the source of a lot of my pain and resulting depression. The doctors who did my pelvic and abdominal ultrasounds said I had visible kidney stones and some strange constriction of the gall bladder, as well as a visible cyst on my right ovary and evidence of one on the back (and therefore obscured) side of my left ovary. My Primary Care Physician says she saw none of these things and everything came back normal so she referred to to Gastro-enterology to deal with the IBS and see if I have food intolerances (that appointment is in a month, if I get to go since I'm moving three hours away soon). I don't know how she can not see things other doctors have seen, and I don't know how she can't see a 4cm ball of fluid next to a 3cm ovary. Seemed pretty obvious to me.
On a suggestion from my grandmother who suffered a lot of the same symptoms as me when she was younger and was told it was related to low estrogen, I got my estrogen tested. It was "dangerously low," but because I have a Mirena we don't know what part of my cycle I may be at, if I have one. We have done two more blood draws for estrogen to have three total, each a week apart, so we can get an average and begin considering a treatment plan. I know the second one was lower than the first, but don't yet have results back from the third.
In discussing the first result with my PCP, she indicated that with the level I was testing at, low-level birth control pills and even some higher-level ones would not give me any contraception protection. This definitely explains why I kept getting pregnant in my teens and early 20's, despite being on hormonal birth control pills for that time. That being said, my history of miscarriages makes me concerned for my fertility and the possibility of future children, and my PCP keeps pooh-poohing me saying that women are fertile into their 40's and not to worry about it. She offered to refer me to an OBGYN for a second opinion, but I've already had 5 different OBGYNs tell me that with the apparent scarring on my uterus (that I don't even know how they see that) and the history of miscarriages and the suspected endometriosis, I should be conceiving as soon as possible both to treat the issues and to have any possibility of having children. I was informed on no less than 7 occasions that I will be lucky to be able to conceive after 30. With that many people telling me the same thing, I just don't trust the one telling me everything is fine (although to be fair we haven't touched on the fertility issue since the estrogen tests).
I'm now moving three hours away, and I need to find a new doctor. Just like the last 12 years of sexually active life, now is not the right time to be having a baby, though my partner and I agree that if an oops happened we'd be delighted and make the best of it. Not that likely with an IUD in. However, now we're dealing with his father who has cancer, we are moving into his parents' home, and we would prefer to be married (in the eyes of our community if not legally since not everyone can marry yet) before having children.
I've known for two years now that everything changed when I got my IUD, but everyone was telling me that the IUD couldn't cause these issues. In a sense they were right, because the IUD didn't cause them so much as the lack of BCP stopped treating the low estrogen. Still, it's a relief to know I'm not "crazy," and that a lot of my current situation DID start to spiral out of control with the change in birth control.
This has been a long, emotional, confusing process for me and I still feel like it's just beginning. I know the estrogen discovery is not likely the cause of ALL my issues, but I'm hoping that it will explain more than it clouds the issue. I have a list of medical issues to hand to a new doctor, though in typing my symptom list above I realized there are some things missing from it so I'll have to add those to it before moving.
I'm a wreck right now. I'm frustrated at having to start all over again with a new doctor, even though I'm second-guessing my current doctor now anyway. Every birthday and period and sex act and romantic-evening-without-engagement-ring that goes by I get a little more down in the dumps about the possibility of never having kids. I can't work because of the pain and depression. I'm hurt and angry every time anyone implies that I have brought my situation upon myself by gaining weight--which happened in the last two years, and these issues have been going on over half of my life now. I'm sick of the fat-shaming and the people who don't take me seriously, I'm tired of having to jump through so many hoops to get state medical just to have a psychiatrist say that 2 neurologists and 4 psychiatrists are wrong and I'm a liar when I tell her what kinds of reactions I had to antidepressants over the years. I'm not even sure how to proceed from here.