Anyone diagnosed w/ Endometriosis?

[FutureMrsC]

I feel my problems are nothing compared to the other problems that you all face on here daily... I really don't know how I would get the strength to face what you face daily.

**Disclaimer: the following paragraph contains information that was MY choice. I'm not asking for debates on whether I should or should not have done what I did. It's not the best solution for everyone, but it WAS best for ME.**

Anyway... I'll start off by saying that I'm 25, currently obese... (bmi is 30)... I've struggled with my weight my ENTIRE life.... at one point, not too long ago, my BMI was sadly 46, nearly 47. Continuing on... I finally decided that after tons of diets (and failures) and w/ my doctor's guidance that I would have gastric bypass done in hopes of getting healthy. That was June 25th of this year. I've dropped 90 pounds in 5 months & feel wonderful, for the most part.

Here's where my endometriosis question comes in. I've had HORRIBLY PAINFUL periods since I "developed" and began starting (around 11-12 years old, so 13-14 years ago). They became so painful that I was put on birth control pills at the age of 14! They weren't regular, but MAN. I could hardly do anything. I remember staying home a few times because I was in such pain. Anyway... once the pill was in my system for awhile, things calmed down a bit. The cramps were still there, but not nearly as intense as they were... it was tolerable. Oh... and as far as the cramps were concerned, I'd cramp horribly in the front (doubling over in pain) and have to have stuff pressed up against my back because it was throbbing (kind of like those muscles throb when you pull a muscle and irriate your sciatica). Anyway... w/ the pills, the pain lessened a bit... went from a 9 on my scale of pain tolerance to about a 5. Still hurting badly, but at least I could manage to go to school and do SOME things.

Moving on to after the surgery... after the surgery, my cycle has been all screwed up. Once it went from July 28-September10. Never ending. It was HORRIBLE. I, at the time, chalked it up to having just had major surgery & losing weight quickly... however, the pain was back to being around a 9 on my pain scale. My Dr switched me over to another birth control pill to try to see if it would help... I've been on it since September. In October, I started getting more intense cramps in my pelvic region... I get lots of pain/discomfort from "you know", so my hubby is currently going without. BMs also cause tons of discomfort now. But what's really weird to me is that I can get the stabbing/throbbing pain in my pelvic region at ANY time. There isn't any certain way I move to cause it, it's just like "Boom! Surprise! I'm here!!!". Enough to currently make me take 2 ultram and lay down for the day. I'm currently not good for anything.

I know that my stomach should not be effecting this- I stay on top of my vitamins, protein, & exercise... There aren't any complications that I know of that would cause this.

Okay... rambling over... my Primary Physician mentioned that it is probably endometriosis... does anyone have any advice to offer?????

Thanks!

 

[happymommy]

I have a friend (who also is obese, but I don't think it has much if anything to do with it) who ended up having a prolapsed bladder and colon. She was having some problems, especially with the BM's.

She went to a specialist - a gynecologist who is also a urologist. They determined the prolapse was most likely due to the 3 pregnancies - could have been her weight also, as it had gone up considerably after having kids. I forget why, but she also needd a partial hysterectomy. She got surgery to put everything back where it belonged, and as far as I know is doing well now. She was in her mid 30's at the time.

I can say that after 2 kids, I have a slightly prolapsed bladder (from what I was told, but I think it may be my uterus). It's okay for now, but may get worse when I hit menopause, as that affects your tissue elasticity. It makes my periods painful for only a day, but it's not a cramp pain, it's a weird pain, hard to explain.

I definitely think your pain is not normal, and due to your surgery, you can't risk waiting to see what is wrong. I'd start with a gynecologist, but see if they recommend a urologist also. You shouldn't have to suffer with this type of pain.

Hope you find out what is wrong, and feel better soon!

Way to go with the weight loss.

 

[rie'smom]

I had endometriosis and after the birth of my 1st son, the doc didn't think I could get pregnant again. I did and had a second son. 5 years later I went to a fertility specialist for help getting pregnant and he told that I had a prolapsed uterus. I ended up having a hysterectomy due to severe pelvic pain.
A few years later, I began having the intense pelvic pain again. Turns out it wasn't the endometriosis causing the pain-it was bladder spasm. Apparently, whenever I start with a bladder infection, the first symptom for me is a spasm. I went through 24 hours of labor for son # 1 and that, in comparison, wasn't bad.
During all this, I weighed between 90 and 105 lbs, sodon't beat yourself up over your weight.
BTW, my 15 yo niece had the lapband and she's had nothing but problems since the surgery.

 

[quentina]

I had it for many, many years....I sufferred horribly all for the idea of having more kids (had one in 97).

The best thing that was ever done for me was a medicine called Lupron. Now, if you google it, you will find all sort of terrible issues with it. My Dr. did warn me that there are lots of side effects....it basically puts you into menapause. I was very lucky, had zero side effects.

It allowed me to live a life that included standing up straight as opposed to being doubled over in pain.

The disease involved lots of laperersoptic surgury, I was going in every 6 months.

Now, understand, I had level 5 which is the worst possible one. I did end up having a complete hysterectomy after many years of battling it.

For the lower end, I believe it is managable. It is all about finding out what works for you. Some do BC pills, depo shot, lupron, hormones etc.

If you are not planning on having kids soon, I would go with something that stops the cycle. The lupron turns off the brain communication with the ovary that makes the endio stop growing. I believe the depo shot does the same however, mine was so bad, it was just not enough.

Best advise I can give you is communicate all symptoms to your DR. Get a new Doctor if you don't see results. I went through 6 of them before one was smart enough to look inside and see what was happening. I never would of reached a level 5 if it was treated.

Fast forward to July 30, 2008......this is the day my adoption was finalized on my 2 children. God works in mysterious ways....these kids needed us more than I needed to give birth. We were lucky enough to add a son and daughter to our family...we now have 3 kids (and no cramps!!)

PM me if you want to talk, need advise etc.

 

[FutureMrsC]

Thanks for the replies so far.

I'm really not "beating myself up" about my weight- it is what it is, I just wasn't sure if it made a difference w/ endometriosis.

Rie'sMom- sorry your niece has had problems with the lapband- I don't think I would have been successful with the lapband- the concept of having a foreign object inside me just kind of bothered me... I wouldn't do well with having to get fills/adjustments, either. The ONLY thing I regret about doing this surgery is that I can't take NSAIDS anymore (ibuprofen, aleve, advil, etc.)- but, if that's the only price I have to pay in order to become truly healthy, then so be it! Anyway... I hope your niece's problems with the lapband get resolved.

I'm looking forward to talking to my surgeon (the one who did my gastric bypass) and see what his recommendations are. Since I'm not currently being seen by an OB/GYN of any sort (my PCP takes care of the annual exams), I'd prefer to go to one that he recommends. He's one of the best surgeons in the state, so his opinion counts a lot... plus, if I did have to have tests done (and heaven forbid, have something go wrong w/ my stomach or intestines or anything else he'd need to fix), it would be nice to be at the same hospital (where they're quite familiar with weight loss surgery patients).

I'm trying to stay as distracted as possible, to keep my mind off the pain... It's pretty much alternating days- friday, I was feeling relatively okay, saturday, I took ultram around the clock for the pain... today, I was much better (until evening)... As I'm leaving for Disney on Tuesday (my brother is a CM in the college program, so my parents, husband, and I are going to see him before christmas), I'm hopeful that my pain behaves itself. When my husband and I went to visit him on Halloween, I spent a TON of time visiting bathrooms @ MK... the pain was so intense it was making me dry heave so I felt safer being in a bathroom, as opposed to walking around making heaving noises. So... definitely hoping that I don't have to experience that again! This time, I'm planning to have all the medicines I could need in my bookbag/purse.

Oh... and I see my Surgeon a couple of days after new years, so it's coming soon! I'm sure he's probably going to want to do some checking of his own before he sends me somewhere else (just to make sure my gallbladder isn't the culprit- w/ losing weight this rapidly, it's entirely possible that my gallbladder does go bad at some point... though I don't really have any symptoms of gallbladder issues- there isn't a correlation between my pain and mealtimes/digestion periods.)

Anyway... thanks again for this support- I'm glad to have someone to talk to. My Aunt had endometriosis, but she isn't all that easy to talk to... mainly because the endo diagnosis occurred at a pretty bad time in her life, so she doesn't like to bring it up.

 

[happymommy]

I'm wishing you a peaceful and pain free vacation!

Hope all goes well.

 

[oybolshoi]

I have endo ... was diagnosed several years ago.

My first question: has your OB done an ultrasound to determine if you have any ovarian cysts?

Much of my truly severe pain came from endometrial cysts that were forming on both of my ovaries. After they were removed with laparoscopy and the endo diagnosis was confirmed with biopsy (that's the only offical way to get a confirmed diagnosis) I thought my troubles were over as long as I kept taking birth control. Less than three months later I ended up in the ER with pain so bad that I thought my appendix was going to burst ... guess what a CT scan showed? More ovarian cysts.

I went on six months of Lupron which I hated ... I had hot flashes all the time and was uber-moody. Had another laparoscopy and partial ovararian removal (2/3 of the left and 1/2 of the right) and it's been pretty manageable since then as long as I stay on the birth control.

If your doctor is just putting you on BC without performing any other tests then shame on him. You should be having an ultrasound to make sure there are no cysts or tumors; you should have bloodwork done for the same reason. Pelvic pain can be caused by endo and it can be caused by other things like Inflammatory Bowel Disease (I have Crohns disease so I know all about that), Interstitial Cystitis (yep, I've got that one too), Urinary Tract Infections, scar tissue, pelvic floor issues ... and on and on and on.

I think you need to push a little harder to find out what's behind this. It very well could be endo but you won't get a formal diagnosis without a laparoscopy. There are other things your doctors should be ruling out just to be on the safe side.

Good luck to you and please keep us posted. I'd also be happy to answer any other questions you might have either here or in a PM.

 

[FutureMrsC]

Thanks for the replies and well wishes for my trip

I don't have an OB/GYN at the moment, but I'm planning on getting suggestions from my bariatric surgeon when I see him the first week in january.

I've seen a gastroenterologist & had all sorts of tests on my digestive system... ultrasounds of my galbladder, hida scan of my galbladder, 2 endoscopies w/ small bowel followthrough & biopsies, the only "label" I got out of all of that was irritable bowel syndrome.

As far as any other condition, the only other one I have is Hashimoto's Thyroiditis.

Oh, and to clarify about my getting birth control- when I started having painful periods (when I started getting my period, actually), the pediatrician gave me 3 months to try them out, but then sent me to an OB/GYN. He did order an ultrasound, but as far as I know, that came out normal (then again, I was... 13-14... it's late, I can't remember that great tonight.) Anyway, I haven't had any other ultrasounds of my "reproductive areas" since that year. My primary care doctor has given me the birth control so that I can use it as its original purpose (to prevent pregnancy- my DH and I can't have kids for another 2 years- that's a complication from my surgery- I need to be finished w/ the rapid weight loss and have some of the mal-absorbtion stuff weakened, which it will, with time). She's been aware of the pain, & during pap-smears, she would feel my ovaries, but never mentioned feeling anything abnormal... I hope this all makes sense.

Anyway- I'm going to put myself to bed now, got a busy day of packing and traveling ahead of me! I'm so excited to see my CM brother!!!!!!