Do I really have Endo?

[HilaryDeAnneT]

I've always had bad periods since they started. Especially really bad debilitating cramps that no pain meds would help. Over the past year I've had unbearable aching stabbing pelvic pain that alternates from front to back pretty much all month. I thought it was from my hips which have been out of alignment since I was a child though supposedly therapy helped fix it.

So I had some chiropractic work but it didn't help. I went and saw OBGYN, he did a pelvic and it was really painful for me which it usually isn't that bad. I had an Ultrasound and he didn't see any cysts or fibroids. But he decided Endo was a possibility since my Aunt has it and I'm rather sure my mom has it too.

So I've been on BC for 6 months, it seems to ease the pain a little and I was almost back to my daily life. Sometimes I'd have really bad recurring pelvic pain though, usually in stressful situations. Nothing helps with it during the pain, no pain meds (mind you I don't have health insurance so I can't afford stronger pain meds). I was also on Cymbalta after having a mental break-down because I couldn't deal with the horrible interfering pain anymore in my life that would hardly let me leave the house. I've also struggled with high anxiety and depression since I was a teen. When I started having the weird pelvic pain, people thought that was causing it as well as all the stomach stuff I've been having over the years but the Cymbalta alone didn't do too much. It helped me stay calmer and they gave me Serqueol because I was having such horrible pain I would be up all night in pure agony. I was lucky if I got any sleep at all. But adding the BC seemed to finally help enough for me to sleep and hold a job.

Now it's coming back  with a vengeance after I went off Cymbalta for a month, now I'm starting it again and the pain is unbearable. I don't know if it's coincidence that it got this bad after I stopped taking Cymbalta but if that were the case you wouldn't think it'd take a month for it to start effecting me. I started having really horrible dull aching pain in my pelvis, lingual area, and it radiates down my thighs and into my legs and alternates to my lower back and sides again. I'm also tired a lot and get lots of headaches and occasionally get dizzy. I don't have bleeding between periods, though I did have spotting once and I bleed rather heavily during periods but not as extremely as some people describe around here.

I don't have the money to get surgery right now, so I can't know if it's Endo and I worry about saving my money for it and then wasting it when I find out I don't have it. I keep doubting myself and worrying it's something else and there's nothing I can do about it. Does it really sound like I have Endo? I've also suffered from awful IBS symptoms since I was a teen, alternating constipation, heartburn and diarrhea which I finally got under control, mostly, by using pyshilliam seeds. I was at the point where I had diarrhea about once a week or once every few weeks and then I suddenly started getting horribly constipated where I'd be so blocked up I'd be up all night in awful lower stomach pain waiting for it to come out so I would feel better. And before the BC pills, I used to have awful shooting rectal pain and worse than usual pain when I had a bowel movement. That's one of the things that have gone away since I been on the BC pill..

Plz tell me I'm not crazy and doing this to myself, that it sounds like it actually is Endo because I'm sick of people assuming my body issues are all emotionally related!For years I thought I had some stomach disease instead and had a colonoscopy at 21 and saw these doctors when I still had medical insurance. Now I don't but I saw a GYNO during Christmas that my parents paid for because I knew something was wrong with me. I've never had this pelvic pain before until it started mysteriously last spring and it has not gone away. I've been in pain every day since and I can't recall a day that I haven't had any pain since last April. That's not normal and there's no way years of anxiety suddenly made me develop this new symptom, and I've always had bad periods so, it must make sense right??

[Drad21]

Im sorry youre having all this pain :( but all of your symptoms do seem to sound like endo but of course Im not a dr & the only way to confirm endo is surgery unfortunately. Whenever & if you do get a diagnostic laparoscopy I suggest finding a dr that using robotics during lap procedures. My regular OBGYN said she could have done my lap but she doesn't use robotics & she mentioned she may not see all of the endo. Apparently sometimes endo can be clear in color & when it's clear it may only be seen by the robotics tool. My paps are always very painful & even have some bleeding afterwards since my endo has progressed. I also have been on like 20 birth controls since I was 16 & Im now 25 all because Id be on them for 6-9 months & then all of a sudden my periods were lasting longer than the sugar pills, the cramps got worse & then progressed to shooting vaginal pain so essentially the bc would stop working. I would have constipation or diarrhea with periods & also painful bowel movements & bleeding with bowel movements. Even though endo is classified in stages it is true that women who even have the smallest amount of endo can have extreme pain. I also get the back pain & extreme fatigue. Ive somehow gotten the pain under some form of control after having the surgery done, having the mirena IUD inserted & being on norethindrone to stop periods (to slow regrowth & protect fertility), & gabapentin which is a nerve pain medicine. I suggest trying the endo diet to try to help if you cant do the surgery currently. Also, maybe apply for state assistance insurance? Also, for days that I have to work & am having extreme pain that I would usually use a heating pad for I found thermacare menstural patches to be a lifesaver (except for right now during the summer when its hot inside my work). This will sound stupid but Ive also found support groups on Facebook to be a tremendous help when Im feeling down & need to chat. Two good ones are wage war against endometriosis & endo sisters scream yellow group. I hope some of this advice helps & I hope you can find some relief!

[Des_a_rae]

I'm in the exact same boat! The pains are soo awful and like yourself nothing helps. I have to knock myself out to sleep through them instead of any pain pill helping.  I have all the pains you described and I also have constant lower back pain. Right around my tailbone and lower back. Like in the small of my back. This pain is almost constant. I have the hip and thigh pain. I thought it was odd. I too was put on birth control and they were a god send..for about 5 months. Then everything came back while I was still taking them. The pain was as bad if not worse. I also had awful bleeding though. Between periods, after sex. I finally got insurance 2 years ago.I knew I was going to HAVE to get insurance to pay for whatever was wrong wtih me.  They thought endo, polyps, fibroids yadda yadda yadda. ON TOP of not being able to conceive for 6 yrs. Finally I had my lap surgery and they found minimal endo, a polyp in the middle of my uterus and a cyst on my fallopian tube.  Some have very little endo and hurt like crazy he told me ( I guess we were trying to figure out where all my pain was coming from) and he said if the surgery didn't help he would have to send me to a pelvic specialists.  I think it still has something to do with my female parts because when my lower back hurts it hurts into my ovaries and my uterus. Not sure how he's going to explain that one. I had my laparoscopy and hysteroscopy on June 25th this year and I go back on the 8th of July, just a couple of days away. I want answers. I'm still hurting after surgery and it's not from the surgery itself.  I don't really know what to tell you to do other than you have got to find a way to see a dr., there's no doubt about that. I know it's hard, believe me I was there. I've dealt with this pain for about 12 years before I got my insurance.  There was nothing I could do to help the pain, unfortunately so there's no advice I can give you there. I'm so sorry you're going through so much. I wished I could help more but I wanted to let you know that you're NOT alone.  We are basically in the same boat it sounds but I actually had the surgery unlike yourself and they coudln't really see why I was in so much pain. I felt that I had it for nothing. I PRAY that having that polyp removed helps me conceive though. That would be 1 of my problems out of the way.  Anyways, I wish you the best of luck, if you need to just talk or ask questions I'm here. It's always nice to have someone to talk to who's going through the same thing or something similar.  Take care of yourself.

Oh btw, I'm not sure about your insurance situation but they dont offer hubby insurance through his work and I help in my dads small business so no chance of insurance there. I DID however get that "Blue Cross Blue Shield Individual Blue". Not sure if you've heard about that or if that's even an option but just in case I wanted to throw that out there.  Before I got insurance I was trying to go through anyone for help. Patient Advocate Centers, things like that. I hope you get the help that you deserve. No one deserves to hurt that much and not have any help with it.

[Sherri90049]

Most of what you were saying sounds like endo to me. Don't listen to any of that crap about whatever is wrong with you being emotionally or psychologically related. That's a crock. You're having physical pain and symptoms. If there's anything psychological going on, it's you just being really sick and tired of suffering and not being treated! I'm glad the BCP helped somewhat. I didn't know Cymbalta could help endo but perhaps it can. I hope some how you can have the surgery! I remember when the endo started for me and how painful it was! I think if you Google endo and diet you can find some diet changes that can really help it alot. I wish you the best! P.S. I always battled with IBS and stuff and what helped me, in addition to diet changes like cutting out refined sugar and gluten and eating more fiber like fruits and veggies, was drinking alot more water. All of the body's systems need sufficient water to function optimally. Most people don't drink near enough of it. God luck! Hope you feel better soon!