I am someone who has lived in your shoes. I was misdiagnosed for over 15yrs and I pretty much diagnosed myself, found my surgeon just to confirm. its so messed up lol.. I am going in for another surgery after being diagnosed with stage IV endo 4yrs ago..... I am in for the long haul with no hope really in site.
yep i totally feel ya. when did u get ur surgery? has the pain stopped at all since? hope u feel better!
I too, was diagnosed with Endometriosis, I was unlucky with the treatments however, most of the brith controls they put me on, aggrivated the Endo, instead of making it better. I am now 1 year free of Birth Control, and have never felt better, also trying to conceive.
I hope the treatment they have you on works, and that your pain goes away, no woman should ever have to deal with this.
I had my surgery 4yrs ago and yes the pain has stopped for the most part because they removed a rectal vaginal cyst that was causing a big portion of the pain. Also I was put on lupron for 6 months and have been on the continuous birth control ever since.
I am almost certain that I have endometriosis but am still waiting for my laparoscopy to confirm it .
The gyno that I saw wasn't the top consultant (would have to wait till january just to even speak to him ) and he wasn't very nice and said to me he didn't think I had it because I had three children with no problems concieving.. I tried to explain to him that I was on the combined oral contraceptive pill for nine years from the age of 16 before trying to concieve (that would have controlled it ) but he wasn't really listening .
I had my last child 12 years ago and since then I have had proper periods aaaaargh !! they were so bad I had hydro thermal ablation 4 years ago.
The pain killers I am on at the moment are quite strong but they only take the edge off and it is always worse after exercising and around ovulation and my period.
The main pain is on the left side ovary area and in my lower back and can't walk for a week for the pain after an internal ultrasound (having my third one on monday aaargh)
What were your symptoms before you were diagnosed?? and did you have any cysts or ruptured cysts??
My symptoms before being diagnosed was severe rectal pain and constipation which ended up being the rectovaginal cyst. It hurt to have sex, have a bowel movement and it felt like someone was stabbing my rectum at random times. It hurt more when I ovulated and a day before my period. I couldnt have a bowel movement until my period was over and that is when the pain would finally subside.
I was nauseated for 2 yrs prior every single day with severe migraines that I would have to go to the hospital to be treated. a year before my surgery I had a acid reflux issue and was on pantaloc but came off it after my surgery and the symptoms completely went away.
I had cramping all the time, I have had urination issues since the birth of my child and they did find Endo on my bladder and bowels so I think that is why I had the bladder issue also its possible that I have IC which there is no real test to confirm.
My first ultrasound showed a 10cm cyst behind my uterus.
I was sent to another doctor as they suspected I had cancer. He did a CT scan as well as 2 CA-125 blood test. The first blood test was 37 when I was ovulating and the second was 78 on my period. 35 being the norm so it showed I had inflammation not cancer, as per my oncologist.
The CT scan showed that the cyst had shrunk to 5cm and that it didnt look like cancer.
So when they finally operated I had endo everywhere and I mean everywhere. The cyst that they said was 5cm wasnt really a cyst at all, what they were seeing was my uterus with all my insides wrapped around it. That is why they could never see my ovaries on the Ultrasounds. They kept saying they couldnt find them then they said they could and they were where they were supposed to (which makes me wonder if these people know anything)
I didnt have any cysts rupture on me.
Blimey you have been through the mill . The scariest bit must have been thinking you had cancer !! Glad you haven't though lol
I had a ca125 result second time of asking as the hospital refused to do it the first time around and only did the other blood work requested!!! I only found out by accident they hadn't done it and was soooooo annoyed as was thinking was ok for weeks !! It came back as 16.5 though in the end which was a huge relief.
I had my third ultrasound today (internal ) and this time no cysts but she told me my left ovary is wrapped around behind my uterus (noone mentioned that before!!!!)
Now just waiting for a date for my double op (laparoscopy and cystoscopy ) with two diff consultants and hope they sort me out lol
How long did your op take ?? sounds horrendous
Yes!!! It has been hell along with all of the other health issues I have had over the last 17yrs.
If you ovary is wrapped around your uterus that is a good sign that you have severe endo. That is just my opinion though.
My op was over 4yrs and it was horrendous. I couldn't urinate after the surgery and had to get a catheter in and just love those, NOT!!! LOL
I had previous bowel surgery when I was 7 so after 27yrs the adhesions were bad just from that, not to mention the mess that was covered all over my insides.
I am thankful to have had the best knowledgeable surgeon doing this as most of them will not remove endo off the bowel, bladder or ureters.
Here I am again thanks to me getting PID I will have to undergo another surgery for the damage that has caused. Not sure if its endo or PID mess so I am on Lupron now because I have fluid behind the cul de sac.
I cant have sex it hurts way too much, I have vaginal and anal fissure since last year, and I am really sick and tired of all of this LOL..
I try to stay happy so that I dont lose my mind
I can't have sex either and hubby is going nuts and its only been a few months.!!!
When is your next surgery do you have a date yet??
Ya I cringe at the thought LOL.. I think of sex as painful torture. That is why I would rather be alone than to be with someone that I know I cant please them the way they need to be pleased. Its a hard situation to be in.
as for the next surgery I dont have one yet. Because there was fluid behind the cul de sac my surgeon put me on Lupron again to see if it will go away and to determine if the issue is PID related or Endo. Either way he is doing one because I cant deal with anymore of this.
Yes it is horrible dealing with the constant pain I feel disabled sometimes.
I too am still waiting for my dates for surgery am a bit scared though as not had surgery down there before!
Are you going to have the same surgeon as last time?
Not sure which one would be better for you to have as they are both horrible so I suppose I can only hope you get it sorted soon whichever one it is.
omy GOODNESS! thats horrible, im sorry it was so bad! sorry im so late getting back to you. mine isnt as spread out as yours,but my doc said it was the most painful of the kind. so far i have MORE pain then i did before surgery :( im thinking i need to start the Lupron even though i dont want to,b/c i want to have children sometime and im 31, and married and have yet to have any kids. :( i cant have sex with my hubby still! its been 3 months and im taking B.c for the pain but it isnt working, we tried 2 times and its worse than before..so hopefully the lupron will work for me (havent tried it yet) please pray! thanks for writing! :) can you tell me how long lupron takes to kick in? and if there are side effects?
oops actually its only been a little over 2 months since surgery..ps i also have it on my urethra hints the pain when i urinate
yes the pain while urinating is the worst!!! I had it over all the ureters, bowels and bladder. The Lupron I guess helped but the pill i took continuously didn't have as many side effects and it worked just as good if not better.
I was taking Marvelon21.
Right now back on the Lupron and back to the surgeon in 3 weeks. I really need something done.
oh wow..im sorry u are still in so much pain ;( how many surgeries have u had? i just found out how much lupron is,and i cant afford it:( i guess ill stay on this b.c pill its called mono nessa half progesterone and half estrogen. thanks so much for getting back..hope ur surgery goes well! so far im still spotting its so irritating blahhh im glad i can talk to someone about it i dont feel so alone :)
I have only had one but it was 4-5hrs long because of how much there was and the damage that was done. Lupron is way too expensive, it cost me $1500 for one injection for 3 months with the add back therapy. I would rather be on my bcp that I have been on for 4yrs.
The funny thing is its possible that I might have Lymes disease as well and I am wondering what part of the pain is endo and what part is that.
If you want to try Lupron and add-back and do not have insurance there is patient assistance and if you do have insurance you can go to
http://www.endofacts.com/ and search coupon. I was able to save at least $70 with the coupon.
Hope this helps,
thanks. ill try that maybe later, right now my doc is prescribing two bcp a day so im going to wait and see if this helps first,its free,so it worth the try!
I was just wondering... does anybody else have a big increase i pain with exercise? or even being on your feet? or stress? I feel like doctors keep telling me that pain from exercise wouldn't happen from endo...but I don't know, I feel like it might, but I have no idea how. Does anyone know anything about that?
yes to all of the above!!!!
I haven't had my lap yet and therefore no diagnosis but I am sure it is endo that I have as it doesn't show up on any scans!!!
Are you booked in for a laparoscopy
Yeah, I had a lap. in march confirming endo on my bladder, ureter, and behind my uterus, are you having one to confirm your diagnosis?
yes just waiting for the date should be by end jan though :)
yes jess.. with me i have more pain with movement. especially when i bend over or if my lower stomach or pelvis is up against something (like the counter top when im doing the dishes). its really uncomfortable! i had the lap already and still no improvement. i also have it on my bladder,urethra. :/ i also have fibro and slipped disks in my neck..i have to tell you ive been taking this natural drug called arnica Montana for the pain and its really helped alot i would try that and they also make one for bladder pain. its hylands brand u can find it online. if taken as directed its been a life saver for me i take it when i know i have to do something that will require physical activity
i forgot to say,that it takes some time to work inside the body (arnica) good luck to you!