I hate to call what I have a disability, but since it has kept me from riding (or really doing anything for that matter) for a year now, I guess it qualifies. The last time I “rode” was back in September, and it was all I could do just to sit on my mare’s back while she followed my husband around the ring - basically a pony ride.
I had 4 surgeries and was out of work most of the year as well. I had never even heard of this stuff until a biopsy came back showing I had it. I seem to have the kind that never shuts off, and I can’t remember the last time I wasn’t in pain. They think it’s growing somewhere near a nerve (my doctors can’t find it) so the pain spikes to crippling levels frequently.
Anyone else have this awful stuff? 
I do, but not nearly so bad. I had excruciating menstrual cramp pain through my 20s, until I finally convinced my gyn that it wasn’t normal and he did a laparoscopy…he found endometriosis and adhesions in various places in my abdomen. He used a laser to remove what he safely could and then I went on continuous birth control pills, so I would not bleed, until I was ready to try to get pregnant. It worked for me, the pain has been manageable for many years.
Has anyone suggested hormonal treatment to you? There are various hormonal approaches (some using BCP like I did, some using synthetic androgens) to controlling it.
These folks have information, support groups and, I believe, can make physician referrals:
Yes, I’m on continuous low estrogen pills - have been for several months now. They lessen the pain, but don’t get rid of it. I got switched to an even lower dose pill last week, and had such a bad flare up over the weekend that I considered going to Urgent Care because I couldn’t control the pain with the drugs I had. (But then I thought about what they’d put me through and had second thoughts.)
Monday I woke up and it was back to “normal” - meaning just annoying and controllable with Advil. It’s weird stuff.
I had fibroids and adhesions from the fibroids that were removed thinking they were causing the pain, but obviously that didn’t work. I’ve been cut open 4 times and no one has been able to find the endo to be able to burn it out.
My next step is Lupron, and I’m not looking forward to that either.
Thanks for the link. I’ll check it out.
ive had it since I was 11, im 21 now. I take depoprovera to help curb growth of the lining every 8-10 weeks. Ive had 3 surgeries do far and it looks like I msy need one this year… The depo mostly controls it for me.
My mother had it, and I probably gave it to her.
I was born by C-section, and appaerently some of the lining “escaped” during the procedure.
After about 15 years of many treatments (including birth control pills before they were birth contrrol pills- 1950s), she had an oophorectomy, and that seemed to fix it.
But that was all a loong time ago.
Don’t feel guilty about your mother, Janet. It’s unlikely that the c-section caused the endo. I think that was the thinking years ago. No one knows what causes it, but the current idea is that it is an autoimmune disorder. There’s certainly reason to believe that it is hereditary (seems to be in my case, mother and grandmother had it, there are no other females in my family). MANY women have sections and don’t get endo and MANY women have endo who have never been pregnant and have never had any kind of abdominal surgery (my case at diagnosis). It is possible for endo adhesions (from pre-existing disease) to grow on internal c-section scars. Mine’s actually been much better since my two sections, though the surgery had nothing to do with the improvement, it was the pregnancies and the subsequent long term breastfeeding that helped (no periods, without taking hormones, for extended periods of time = no internal bleeding = no new adhesions).
I had endometriosis, now post menopause so I can happily say I am free.
Started with painful periods, and then it was mid cycle, so a week good, a week bad, a week good, etc, etc. Awful way to live. The week bad was extreme double over pain.
I am kind of stoic, so I muddled through. Then it became unbearable, and an ultrasound revealed a bad ovary or whatever, so I was scheduled for sugery.
The doc wanted to give me a hysterectomy, but I was still child bearing and well, just didn’t want to go that route. I did have a single oopharectomy(one ovary removed).
I had class 5 endo, and when they removed the ovary, let me tell you, I was in major pain for a few days, and even said, felt like someone took a cuisinart to my abdomnal cavity. The doc must have scrapped a lot.
About 6 months later, the pain was exquisite again, and so I went to the doc and said, take it all out. I can’t cope. He told me no, that I had too many adhesions from the endo and that too many nerves and other organs were all ‘glued’ together.
So, he put me on birth control, and OMG, what a relief. Now, why didn’t he do that before was my thought. I stayed on bc for years until I turned 54 and went off, and never have looked back.
Really I can’t say I have any menopause symtoms(knock wood).
I am so sorry for anyone who has endo. I can only suggest bc or surgery if you are a canidate.
I also, due to a herniated disc used accupuncture. I am kind of a fan of accupuncture, and wonder if that might help? Make sure you get a good accupuncturist and not just some quack.
My heart goes out to anyone suffering from endo, it is truly disabling( I know, I lived that way for almost 10 years, each year getting worse).
In my case, mine didn’t show up until I was 38. I’ve never had surgery or kids, and my doctor thinks it’s more like an autoimmune response - like Canaqua mentioned. I’m now on an even lower dose of LoEstrin and after a really bad week, it seems to have regulated it some. I’ve begged to have everything ripped out, but no doctor wants to do it. I can’t imagine how people manage to live with this for years and years. You have my sympathy. 
Well,
It appeared almost immediately after I ws born. Neither her mother, sister. multiple aunts, nor her daughters had it.
Have you gotten a second opinion?
I ask because I suffered through uncontrollable endo pain for several years. It was never as bad as yours, but I could never get a handle on getting the pain to really go away. I was on continuous BC, had 3 laparoscopies, and did a 6-month course of Lupron (SUCKED). Nothing changed.
Finally I went to see a different doctor who prescribed a BC pill with a completely different dosage…and BAM–pain was gone and has been since. Every once in a while I have some mild issues, but for the last 2 years I’ve been relatively pain-free.
For me personally–my endo is mild, but much of the adhesions are under arteries/major blood vessels and attached to other organs (bladder, etc.) so they cannot remove them. I was resigned to living in pain after hearing that they could not take the adhesions out, but I was wrong.
Please consider getting another opinion…it’s awful to think that you’re so debiliated by this disease. PM if you want to talk more.
Best of luck to you.
[QUOTE=Canaqua;5456439]
Don’t feel guilty about your mother, Janet. It’s unlikely that the c-section caused the endo. I think that was the thinking years ago. No one knows what causes it, but the current idea is that it is an autoimmune disorder. There’s certainly reason to believe that it is hereditary (seems to be in my case, mother and grandmother had it, there are no other females in my family). MANY women have sections and don’t get endo and MANY women have endo who have never been pregnant and have never had any kind of abdominal surgery (my case at diagnosis). It is possible for endo adhesions (from pre-existing disease) to grow on internal c-section scars. Mine’s actually been much better since my two sections, though the surgery had nothing to do with the improvement, it was the pregnancies and the subsequent long term breastfeeding that helped (no periods, without taking hormones, for extended periods of time = no internal bleeding = no new adhesions).[/QUOTE]
[QUOTE=Janet;5456758]Well,
It appeared almost immediately after I ws born. Neither her mother, sister. multiple aunts, nor her daughters had it.[/QUOTE]
I have not heard of any link w/ c sections and endometriosis, except for scarring and ahesions from the c-section. There are women w/ severe endometriosis (revealed on lap) who have no symptoms, believe it or not, other than infertility. My cousin’s wife was like that. There are probably many women w/ endo who don’t know they have it. There are other people with a few adhesions and severe pain. And the more surgeries they get, the more adhesions and the more they hurt.
I had horrible endometriosis for years finally had a hysterectomy. It gave me back my life. I too was in constant pain and even when I was not doubled over I never felt quite right. I would advise you to seek out other opinions on pain management and disease management. Some of those treatments were ruled out for me because of other health concerns but you may be eligible. I feel your pain and wish you best of luck. It is in severe cases as much of a disabillity as any other affliction.
Yes, that is one of the real conundrums about endo…there is little relationship between the level of pain and the extent of the disease. Very weird. The only laparoscopy I’ve had was in 1986. At that time I had “moderate disease” and moderate to severe pain, but only around my period. Most of it was around one ovary and in the “cul de sac”. I’ve not had a lap since, because I have only mild cramping…who knows what it looks like in there, but I don’t particularly care because I’m done having children and am approaching menopause. During my first section, in 1990, they had a look around, at my request, and, again, saw moderate disease, with no organ threatening adhesions. I didn’t even bother to ask them to look during my 2002 section. The only thing to watch for at this point, for me, is adhesions interfering with bowel or bladder function, so far, so good.
[QUOTE=Canaqua;5458893]
Yes, that is one of the real conundrums about endo…there is little relationship between the level of pain and the extent of the disease. Very weird. [/QUOTE]
Yep. They can’t even find mine. Only a biopsy showed I have it.
The first pill I was on helped, but didn’t do enough so now I’m on a different one. I just started it though. Today, I get to go see another specialist.
My doctor thinks he knows where it is now, and I’m tempted to let him dig around in there one more time to see if he can find it - otherwise the next step is Lupron and I’ve heard nothing but horror stories about it. :dead:
I finally made it to the barn yesterday and even though all I did was brush my horse, it wrecked me for the rest of the night. And then as I was turning her out, she took her nose and gave me a nice poke right in my sore spot. I love you too, horsey!
I had both of my ovaries and my uterus removed in 1992. I’ve felt great ever since. It’s drastic - but it works!
Best of luck to you…
That’s what I had done too, since I had both fibroids and endometriosis. But I was past childbearing. Not an easy surgery. The surgical menopause wasn’t fun either. Had to go a month w/ no hormone replacement to allow the endometrial implants to die off, then went on the lowest dose estradiol that I was comfortable with.
I finally got a diagnosis today. I have obturator nerve entrapment caused by the endo. Still no cure of course. heh
At least I know for sure now.
Update: I think they temporarily fixed me. I’m still a bit in shock. I was given Topamax last night. It’s an anti-seizure drug that makes the trapped nerve stop firing so fast. About 30 minutes after I took it the pain was just gone. I couldn’t believe it. First time in a year I’ve been pain free! Now just gotta get rid of the endo that’s causing it - not as easy.
Hopefully now with a correct diagnosis, you are on your way to a much more pain free life. Keep in touch and let us know how you are doing.
[QUOTE=GotGait;5461036]
I finally got a diagnosis today. I have obturator nerve entrapment caused by the endo. Still no cure of course. heh
At least I know for sure now.
Update: I think they temporarily fixed me. I’m still a bit in shock. I was given Topamax last night. It’s an anti-seizure drug that makes the trapped nerve stop firing so fast. About 30 minutes after I took it the pain was just gone. I couldn’t believe it. First time in a year I’ve been pain free! Now just gotta get rid of the endo that’s causing it - not as easy.[/QUOTE]
I hated Topomax but if it works it is a miracle drug. I hope continues working it’s magic.
Very timely thread as my daughter has been bent in two on Thursday and last night. It only happens when she has her period though and had to change her BC in the last month (just change the ins and outs dates of her ring). Otherwise, the pain killers worked but this time the pain was excruciating. She was doubled over, clammy, crying and felt sick to her stomach from the pain. Ugh!
I had painful periods but nothing that would stop me from going to school/work. If I could I just stayed in bed and slept the day away (which is what she basically did on Thursday).
