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Does this sound like endo?

On May 31, I experienced a horrible crampy stabby pain in my abdomen and pelvis. Looking back, that was about the time I should have been ovulating (period I'm may began on the 14th). Pain was so bad I almost passed out. Took some ibuprofen and went to bed. Pain was still there, if slightly less intense the next morning. A few days passed in moderate pain, and the pain itself receded from my abdomen and focused in my pelvis, on the sides, just medial to my hip bones, more on the left than the right.

On day 3 of the pain, I woke to a numb sensation in my left leg. It wasn't pins and needles, but like a limb that was asleep but now mostly awake. That lasted until I went to the Dr. On 7/6. She gave me a sterroid shot and pills, thinking it was sciatic pain as my lower back was sore. Ordered an ultrasound, as I have a long history of ovarian cysts, many of which like to rupture.

Thanks to the laziness of the referral dept. My ultrasound was not scheduled until 2 weeks after my appt. June 20th. My period started on the 13th, and the first day and a half were brutal. The pain returned full force.

During my period, I also had hot flashes. I'd just get really warm all of the sudden and start radiating heat. I took my temp and it was 99.2 or below. The lymph nodes in my groin and neck were swollen, the ones in my neck painfully so. Because of this, my Dr. Admitted me to the hospital.

My blood work is "perfect" my urinalysis is clean. No infection. Dr. thought mono. Negative. He's now running blood work for Epstein Barr and Parvo, but as soon as my period ended, the lymph nodes went back to normal, and my fevers are practically gone.

While in the hospital, they did a ct, and it was normal except for my mesenteric lymph nodes, which were swollen.

When looking back, my periods have been mostly normal. There was this stretch of time when I was 20 that I would skip 2-3 months of having a period, then have one. There was also a stretch of a few weeks last year when I was 27 that sex and orgasms were painful.

I brought up the possibility of endo to my dr since my mother had it, and he dismissed me, shamed me for googling my sumptoms, and told me if I had endo, I would have known it by now. I would have had these symptoms since my first period.

So, does this sound like endo, or am I barking up the wrong tree?
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136956 tn?1688675680
What you have said is like textbook endo.

Here is why

1) Pain during sex and orgasm
2) Being on the pill for a while to stop cycle so pain would most likely have been minimal and when you came off the pain came on strong
3) You are having numbing pain in your hips and legs during cycle
4) Pain during ovulation
5) Almost passing out from pain
6) your mother had endo that makes you 10x more likely to have it.
7) Known for having cyst that come and go/burst
8) Pelvic mesenteric lymphnodes inflammed and swollen

These are just the ones I pulled out from reading what you have said.  That being said I would recommend you see an endo specialist who will pick up on what you are saying. Have you ever been tested for PCOS? It goes hand in hand with Endo as well. (multiple cysts)

Let me know if you need help finding an Endo surgeon. You want someone who knows what they are doing it is very imperative. Message me if you have any further questions as well. I will get an email saying that I have a message where as here when I post for some reason the notifications haven't worked in years and I want to make sure you get the help you need.
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1 Comments
Agreed, sounds like endo to me as well. If you are getting hot flashes and having the swelling as well, it indicates a hormonal imbalance which is related to/caused by endo. I'm really sorry for your pain, as someone also with endo, I just want to give you a hug. You've been dealing with a lot and the road is going to be long, but there is more information, new treatments, new discoveries coming out all the time, don't give up!
In addition to seeing your doctor, you might consider changing your diet to balance out your hormones, which will reduce a lot of these symptoms. It may sound radical but try cutting out all dairy for one week. Dairy contains tons of hormones - it is meant to fatten baby cows and is just really not good for people. I had a lot of problems with cysts, bloating, cramps, pain, possibly IBS.. and when I cut dairy out, it was the biggest positive change I've ever experienced in my endo journey.
Your doc will probably not even mention the connection between autoimmune diseases (like endo) and dairy, but she should. I recommend researching the "endo diet" and considering making some big changes before you do anything radical surgery wise. Wish someone had told me that when I got diagnosed.. Good luck dear, I hope everything works out for you.
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