Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
So... I have been having some problems and I felt like talking to people who actually have endo might be more helpful than googling and working myself up.
The 26th of last month was the first day of my period. I awoke with bad but tolerable cramps, which progressed within an hour to the worst pain I've ever felt in my life, enough that it caused me to double over suddenly and vomit all over the carpet. It wasn't unlike any period pain I'd felt before as far as the type of pain. It felt like cramps, but 1000x worse, and it involved stabbing pains in my vagina as well. Went to the ER, puked three more times while I was waiting and sat there squirming and crying for hours. They did a pelvic exam, pelvic ultrasound, and urinalysis. Nothing was out of the ordinary and they could find no evidence of any ovarian cysts, ruptured or otherwise. Their conclusion was that this was just a really bad period. Yeah, no joke.
There's a few strange things about this:
- It was dull but intense to begin with, but it reached its worst point very quickly and then stopped very suddenly after several hours
- For the rest of the week, I had dull/mild cramps - which is unusual for me, as I never have cramps past day 2-3
- I have never ever had pain like this before. Occasionally I'll get bad cramps when I'm on day 1, but if I take some Aleve, I usually feel all right within an hour
And then there's the bladder issues. About 2-3 weeks before, I'd started noticing some troubling new symptoms. I was having bladder pressure when I urinated and felt a little bit of discomfort. Also had a sore flank, which made me worry about a UTI. I took one dose of Bactrim to which I had an allergic reaction. Was switched to Doxycycline for 3 days before the results of my urinalysis came back. No bacteria had been found, so they decided there was no infection after all, even though my white blood cell count kept coming back elevated off and on.
I am still having bladder weirdness. When I drink too fast I feel pain. I feel tender around my pelvic area. And after only two weeks since the end of my period, I'm starting to have cramps (manageable) again. I've taken Aleve around the clock, and sometimes it seems to help but others it doesn't. I got myself a heating pad and have found so far that it actually makes the pain worse, but for some reason hot baths help. In addition, I've been freakishly fatigued, and my body hurts. My sides hurt, my hips hurt, my tailbone aches when I move, I'm constipated, it hurts to pass stool, I feel a little achy twinge after I pee, my arms and legs are heavy. I feel sick.
The reason I'm here is my sister has PCOS and probably endo as well. And my mom also had tons of gynecological problems. I'm quite honestly terrified. I have a painful neurological condition already that has brought me enough stress and grief and shaken my faith in modern healthcare. And then to go to the doctor's after this mess and be told that it's normal, that there's nothing I can do except chart, and that they can't help me - it makes me want to cry. I don't know what to do, all I can do is pray that this is temporary. I never had problems like this before, and I don't know if I can handle one more painful affliction. I feel like the universe is trying to kill me. I feel like I'm being pushed to my limits here.
I'm sorry if this sounds really insensitive coming from someone who doesn't have endo. But please, if you have any advice, any insight, any reassurance, help me. I've never heard of endo coming on suddenly, and I know there are so many other possibilities, but that what if is still nagging at me. What kinds of tests do I need to demand, if any? Am I really just supposed to wait and ride this out? What safe-ish over the counter drugs can help, besides Aleve and ibuprofen? Do you think I should see an actual gynecologist or even a urologist? I'm sorry if this doesn't quite fit here, but... People who don't have these kinds of problems just don't understand. They tell you that everything is normal and that this is just how some people are. I won't settle for that. I feel like something is wrong.
The 26th of last month was the first day of my period. I awoke with bad but tolerable cramps, which progressed within an hour to the worst pain I've ever felt in my life, enough that it caused me to double over suddenly and vomit all over the carpet. It wasn't unlike any period pain I'd felt before as far as the type of pain. It felt like cramps, but 1000x worse, and it involved stabbing pains in my vagina as well. Went to the ER, puked three more times while I was waiting and sat there squirming and crying for hours. They did a pelvic exam, pelvic ultrasound, and urinalysis. Nothing was out of the ordinary and they could find no evidence of any ovarian cysts, ruptured or otherwise. Their conclusion was that this was just a really bad period. Yeah, no joke.
There's a few strange things about this:
- It was dull but intense to begin with, but it reached its worst point very quickly and then stopped very suddenly after several hours
- For the rest of the week, I had dull/mild cramps - which is unusual for me, as I never have cramps past day 2-3
- I have never ever had pain like this before. Occasionally I'll get bad cramps when I'm on day 1, but if I take some Aleve, I usually feel all right within an hour
And then there's the bladder issues. About 2-3 weeks before, I'd started noticing some troubling new symptoms. I was having bladder pressure when I urinated and felt a little bit of discomfort. Also had a sore flank, which made me worry about a UTI. I took one dose of Bactrim to which I had an allergic reaction. Was switched to Doxycycline for 3 days before the results of my urinalysis came back. No bacteria had been found, so they decided there was no infection after all, even though my white blood cell count kept coming back elevated off and on.
I am still having bladder weirdness. When I drink too fast I feel pain. I feel tender around my pelvic area. And after only two weeks since the end of my period, I'm starting to have cramps (manageable) again. I've taken Aleve around the clock, and sometimes it seems to help but others it doesn't. I got myself a heating pad and have found so far that it actually makes the pain worse, but for some reason hot baths help. In addition, I've been freakishly fatigued, and my body hurts. My sides hurt, my hips hurt, my tailbone aches when I move, I'm constipated, it hurts to pass stool, I feel a little achy twinge after I pee, my arms and legs are heavy. I feel sick.
The reason I'm here is my sister has PCOS and probably endo as well. And my mom also had tons of gynecological problems. I'm quite honestly terrified. I have a painful neurological condition already that has brought me enough stress and grief and shaken my faith in modern healthcare. And then to go to the doctor's after this mess and be told that it's normal, that there's nothing I can do except chart, and that they can't help me - it makes me want to cry. I don't know what to do, all I can do is pray that this is temporary. I never had problems like this before, and I don't know if I can handle one more painful affliction. I feel like the universe is trying to kill me. I feel like I'm being pushed to my limits here.
I'm sorry if this sounds really insensitive coming from someone who doesn't have endo. But please, if you have any advice, any insight, any reassurance, help me. I've never heard of endo coming on suddenly, and I know there are so many other possibilities, but that what if is still nagging at me. What kinds of tests do I need to demand, if any? Am I really just supposed to wait and ride this out? What safe-ish over the counter drugs can help, besides Aleve and ibuprofen? Do you think I should see an actual gynecologist or even a urologist? I'm sorry if this doesn't quite fit here, but... People who don't have these kinds of problems just don't understand. They tell you that everything is normal and that this is just how some people are. I won't settle for that. I feel like something is wrong.
Both the CT scan and ultrasound though have missed my left ovary (if I have one- they are leaning towards that I don't but I have too much pain to believe that!)
Your symptoms sound a lot like mine-without the puking!
Don't give up. Go for another opinion. I'd recommend trying to find a female gyno or female D.O. (both my gyno and doctor are D.O's and i feel that's made a HUGE difference!)
Call them- explain the pain- I suggest crying if you have to- I'm finding they only get me in within a few weeks if I cry (to heck with the pain otherwise I guess is the feeling!)
I hope you get something figured out!!