I’m putting this out there for the whole world to see because I apparently have a magical belly that grows to reach about 6 month pregnant size when I ovulate (okay, if you are a guy (or a gal) and this stuff makes you cringe then you can stop right here). I figure with the magic of the internet I might find someone else out there with this amazing magical belly as well (as it seems to be baffling my doctors).
I’m a relatively thin woman of thirty years of age with 3 children born vaginally.
(July 20th, 2012. Knowing I will ovulate in the coming days I take a before photograph)
I’ve never had surgery and have lived a pretty healthy life (besides a facial neuralgia that flares up from time to time). However, for the last 6 months or so I’ve woken up to this once a month (remaining this large for 48-72 hours or so and then slowly decreasing over a few days during the middle of my cycle):
(May 29th when I really realize that there is nothing normal about looking 6 months pregnant overnight…before I was trying to tell myself it was just something that would pass but as it was now mixed with severe pain I knew I had to look into it).
On May 30th I take myself to the local hospital where the emergency room doctor tells me that my hormones must make me more susceptible to gluten intolerance and it must be celiac disease or at least IBS (despite the fact I have no digestive issues and a complete celiac panal came back very much negative just a month or two earlier). A gastroscope with small intestine biopsy was moved from the end of September to the beginning of July and that also came back clear (5 samples taken and biopsy of a solitary gastric polyp). No celiac disease and no h. pylori.
The swelling has now (the past two cycles) started to happen not only at ovulation (but this is when it is most severe and long lasting) but lasting menstruation as well. When I am swollen it is hard to eat as it feels like food is getting stuck in my throat. I have chronic back pain from the fact that my abdomen shrinks and grows regularly. I have spotting in the middle of my cycle (generally a couple days before I start swelling). I am easily fatigue and have been dealing with palpitations/shortness of breath on standing. Foods that I’ve enjoyed in the past repulse me. Ovulation is intense and pain on my lower right side radiates to my leg and back not only then but at other times of the month as well. Menstruation, as always, causes pretty intense (but certainly not unbareable cramps in my back/legs (especially on standing for a while). I’m generally not terribly gassy.
The night of July 22nd/23rd (Note these photos are taken about 48 hours after the skinny one above. I haven’t eaten anything unusual or gas producing at all) I begin to swell again and decided that I would take myself to emergency at the larger hospital instead. I make a document of my pictures and measurements from that last couple of months and it is clear that I am going to treated more seriously this time around. The triage nurse is quite appalled that I was basically turned away two months earlier. For the number of patients in the waiting room, I do not wait for long and the nurse that takes me in looks at me and says, “that really quite distended, eh?” I tell her that there are photos but she says she does not even need them because I am tiny everywhere else besides my stomach. The doctor and I speak and he knows I am quite knowledgeable (being a doula and dabbling in midwifery studies). His best guess it that I have severe endometriosis and that I should be seen by an OBGYN as soon as possible (within the next couple of days).
Finally, on Thursday, still swollen and sore I call the OBGYN’s office as I have not heard anything and the secretary sneaks me into the doctor’s clinic on Friday because while the doctor is not taking new clients the secretary things I should be seen. I think that I am finally going to get answers, but I am only in the office for 10 seconds and she’s telling me that it is irritable bowel syndrome and prescribing me birth control pills (that I’ve never taken and don’t plan on taking unless some type of real diagnosis is made). She refused to hear the other symptoms I have and how things are progressing. When I asked about endometriosis she said, “edometriosis DOES NOT cause bloating.” It took me two minutes after I left her office to find this, this and this (which talks about women with endometriosis also being diagnosed with IBS because of intestinal adhesions). I wanted to go back in and show her but I have really little patience for people that think I’m stupid.
So I guess I have a few questions that I’d love to hear answers to (if you know someone with IBS and/or endometriosis I would love to hear their experiences).
1) Those of you diagnosed with IBS: Do you only get symptoms of IBS during ovulation? Were you diagnosed without bowel changes? (I occasionally go to the washroom less but that could very well be related to barely eating when swollen the last couple of months….it didn’t happen at all for the first 4 months of swelling) Are you noticeably gassy with you have symptoms or can you go 3 or 4 days with no gas (or gas type pains…..my pain is very deep ovulation like pain) at all.
2) Those of you diagnosed with endometriosis: Do you swell? Do you get symptoms with ovulation (I know it is generally related to menstruation)? Were you blown off many times before getting diagnosed? Do my symptoms sound like they might be related to adhesions.
I’m not terribly sure what my next steps are going to be, and I don’t think the gynecologist has any intention of seeing me again. I don’t intent to take birth control without a diagnosis. I’m sure looking for personal stories because I swear, I’m smart enough not to mix intestinal issue with reproductive issues. The feeling and very much different for me but this doctor has made me feel like I am crazy.
Pass along if you know someone that might be able to offer insight (as this is a VERY small blog!).
Thank you for reading
(December update as this is still circulating: I spend the month of September getting my GI system checked out from top to bottom because an internist tells me that I need to do that to rule things out before I can see an OBGYN. That I HAVE to see an OBGYN if everything came back good because something WAS going on. Everything GI turned out fine (I knew it would). On non contrasted CT scan my uterus was heterogenous (not homogenous, which is normal), I had pelvic phleboliths (but those can be really common) and linear density in the lower right (I think) lung base.
I’ve lost 20 pounds despite doing my best to snack more frequently. I’m occasionally nauseous.
Early in December I had pretty massive bleeding (my husband want to take me to the hospital for it). It was clot filled and “tissuey”. I work us several days later and was skinny (the swelling, as of August, had remained pretty much constant and well above my normal). I thought that this was the end of it, but within 2 days I was having pain (one really intense bout and then the more normal pain I’ve come to accept as my new normal) and swelling again. With December ovulation I’ve gain a full 10cm over the measurements I was getting after the bleeding I had.
GP does not want to see me anymore. Wants to send me to a psychiatrist because “psychological issues can make it seem like you are having physical problems when you aren’t”. She’s refusing to send me to an OBGYN. Something is clearly off with that system, but she refuses to listen to me, not understand that a woman can know her body very well and just KNOW.