Hello. My name is Lauren. Im currently undiagnosed with endo but wanted to reach out and see if anyone else has struggled with some of my symptoms.
As a teenager I was textbook endo or adeno but was told it normal for periods to hurt. However, my cramping was so bad at times I thought I would black out. I had severe pain that raidated into both sides of my back hips and upper legs. I had nausea, diarrhea, and often felt "fluish" like I had a low grade temp. The worst of my pain was always when my period started and within a day or two I felt totally fine. I would have IBS symptoms most days in the form of diarrhea but it wasn't super painful. I also had super heavy periods with lots of clots. I was also super irregular. Would have one long period then go 2 mos without one. I ultimately learned to live with it. You just hope it doesn't hit during an important event bc if so you know you would have to cancel.
Eventually, I was placed on depo and like magic no more periods, no more pain. It was magical. I was on depo for 4 yrs. They took me off and for some reason I did not have a period for 7 years. It was weird but honestly, no period, no pain. So I was ok with it. One doc checked my hormones and they came back normal and she said I needed an ultrasound but I never followed up. Stupid me.
Fast forward to 2 years ago. I slowly started getting my period back. At first it wasn't painful but it quickly started getting very very uncomfortable. Then the event that has changed my life. I went on a camping trip with a friend, she started and suddenly and way off date, I started. That night I began having severe pelvic burning. It was irritating my bladder and causing clitorial pain. I thought I had a UTI. At first all my cultures came back negative. Then I suddenly got 4 utis back to back, culture confirmed. I took abx and got on d mannose and they cleared. However, the burning pain and throbbing cont.
I was tested for IC, not it. I was tested for resistant UTI and that wasnt it. Eventually, they nerve blocked my pudendal nerve and it helped tremendously. So I got diagnosed with pudendal neuralgia. Here's the kicker I had zero risk factors for developing it: have an active job so dont sit for a long time, dont cycle or ride horses, no pregnancies/birthing, no previous surgeries. Even the doc was stumped as to why I developed it. And I've had terrible throbbing, burning pain off and on ever since and def my period makes it worse. I feel like there is something pulling on the back of my vagina and rectum. I get shooting pains in my left leg. My bladder is very irritable and the left side of my vagina, very very deep throbs. I have suddenly went from diarrhea everyday to feeling constipated. I get stabbing, breath taking pains in my rectum and pelvic, mostly left sided.
But here's the weird part. I do not get the same horrific cramping I use to have. My periods are more regular but I feel super sick like I have the flu and my pelvic girdle burns so bad when Im on my period and never fully goes away once I'm off. I feel so fatigued jist getting out of bed and going to work is a monumental task.
I am doing pelvic PT which temporizes the situation but 2 yrs later hasnt even come close to solving the problem. I am on gabapentin and aleve which barely takes the edge off. I feel something is terribly wrong with me. I use to be a college athlete, would hike mountains, was vibrant. Now walking is hard and irritates my pelvis and I feel like a shell of my former self. Like what is going on???
I feel like a sinking ship and want to know if any endo sufferer on here has had a similiar experience? If so , did anything help. Pls help.... I know this was long. Thank you if you made this far.