Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
Hi everyone! First off, it is a bit nuts at how few support forums exist for endometriosis plagued women.
i've been reading some of your stories and now my problems seem SO small. I'll share my story but if you want to skip down to my questions, feel free!
I am 32, have 2 children (4.5 and 1.5) and unlike many of you, i had no symptoms until after i had my daughter last year. and when it hit at just 10wks post partum, it hit me hard. I suspected it was just perhaps my body regulating after having my daughter and i saw an endo to have my thyroid and hormones tested. Hormones were all over the place but i was basically told to deal with it since i was still nursing my daughter. when i was 5mo Post partum, i went to the gyn but my regular gyn (who i trust) was out on medical leave. his partner did an u/s and said my problems were due to a fibroid. I went on the mini pill since i was still nursing and well... that did nothing for me. So after several more excruciatingly painful periods, i weaned my daughter and got on the Pill. helped while i was on it but i just cannot abide being on it.
long story short, i got off after a few months and the pain i experienced in the past few months was just awful and it has gotten worse and worse and pretty much only have 1 "good week" with minimal pain. I saw my doc last week and at first he suggested an ablation + tubal but after describing my symptoms (painful bowel movements specifically + extreme lower back pain and bloating. how can GAS be SO darn painful?!) he said he felt that the fibroid was not the root of my problems. he did another u/s last week, fibroid still the same size, 3mm. i'd had a cyst rupture just days before which would explain the crippling "i can hardly walk" pain i had experienced earlier in the week.
SO, the meat of the problem. He's suggested laproscopic surgery to see what's going on and removing any growth. Followed by Lupron (which i've heard AWFUL things about) and then getting on and staying on the pill. While i'm sorely tempted to just get on the Pill and not worry about it anymore, hoping it will help with the pain.... it worries me NOT knowing what's going on in there.
I'm scared of Lupron, i'm wondering if i HAVE to take it after this surgery? (i will ask him this too, i am just looking for experiences) Anyone want to share their experience? Any similar stories? i'm reaching here, i'm really not finding enough info to make me feel better about all this. lol!
i've been reading some of your stories and now my problems seem SO small. I'll share my story but if you want to skip down to my questions, feel free!
I am 32, have 2 children (4.5 and 1.5) and unlike many of you, i had no symptoms until after i had my daughter last year. and when it hit at just 10wks post partum, it hit me hard. I suspected it was just perhaps my body regulating after having my daughter and i saw an endo to have my thyroid and hormones tested. Hormones were all over the place but i was basically told to deal with it since i was still nursing my daughter. when i was 5mo Post partum, i went to the gyn but my regular gyn (who i trust) was out on medical leave. his partner did an u/s and said my problems were due to a fibroid. I went on the mini pill since i was still nursing and well... that did nothing for me. So after several more excruciatingly painful periods, i weaned my daughter and got on the Pill. helped while i was on it but i just cannot abide being on it.
long story short, i got off after a few months and the pain i experienced in the past few months was just awful and it has gotten worse and worse and pretty much only have 1 "good week" with minimal pain. I saw my doc last week and at first he suggested an ablation + tubal but after describing my symptoms (painful bowel movements specifically + extreme lower back pain and bloating. how can GAS be SO darn painful?!) he said he felt that the fibroid was not the root of my problems. he did another u/s last week, fibroid still the same size, 3mm. i'd had a cyst rupture just days before which would explain the crippling "i can hardly walk" pain i had experienced earlier in the week.
SO, the meat of the problem. He's suggested laproscopic surgery to see what's going on and removing any growth. Followed by Lupron (which i've heard AWFUL things about) and then getting on and staying on the pill. While i'm sorely tempted to just get on the Pill and not worry about it anymore, hoping it will help with the pain.... it worries me NOT knowing what's going on in there.
I'm scared of Lupron, i'm wondering if i HAVE to take it after this surgery? (i will ask him this too, i am just looking for experiences) Anyone want to share their experience? Any similar stories? i'm reaching here, i'm really not finding enough info to make me feel better about all this. lol!
My doctor told me that any treatment other than Lupron would be "like pissing in the wind" but I have a severe case that went undiagnosed for many many years. If you can start off small, I would. Some women do just fine on continuous BCPs. I know you said you've tried it, but you may be surprised at how good you feel after surgery, and the BCPs might be enough to keep it at bay.
Oh, and WELCOME!! There is a crazy lack of endo support out there, but you've come to the right place! The ladies here are at all different stages of life and endo and I'm sure you'll fit into our little community quite nicely :)
I am currently on Lupron, but I used this as last resort and I really only using it as a bandaide until I can have another surgery and actually have my endo removed this time (I also have severe endo). I would agree to use it as a last resort, there have been many women who et relief from BCP even those who have more severe cases, it really depends on the person. My reservations with Lupron stem from that fact that this medication has a max amount of time it should be used. It is 6mtns without add back, 1 year with add back (norethinodrone). So my issue was "so I use this and it works, but then WHAT do I do after I can't use it anymore".
IMO I think starting with the least severe medication first is a good way to go. Research indicates that the best way to treat endo is with proper removal (excision), but finding a Dr. who specializes in this can be hard, there are very few who can truly remove endo (at least according to the research I have done).
Good luck! Ask us any questions!
I personally would never take Lupron, but I've had a bad experience with medications before (I took an aromatease inhibitor). So when I see lawsuits cropping up or negative write ups I stay away from it at all costs. I didn't do that with the aromtease inhibitor and I totally regret it.
And as JenC13 mentioned you could always look into getting a second opinion (or even a 3rd and 4th).
Welcome to DS!
I prefer to not project my experience onto others, but will try to answer questions if you'd like to message me. I send you HUGS of healing!
~~Pup
Try different birth control pills. The different formulations seem to have really different levels of effectiveness for endo, and different side effects. I've been on a bunch of different pills and wish I had thought to write down somewhere what each one did to me, but that would just be how they affected *me* anyway.
I've had the Mirena IUD for a little over a year now and that's definitely helped, though no miracle drug. No periods is pretty awesome. Getting it inserted was actually the most painful experience of my life though. I don't know whether that's an option for you or if you want to have another kid soon.
First off, we don't plan on any more children. i had pre-eclampsia with my first, he was 6wks early (induction) and PIH with my 2nd. i was induced at 38wks with her and had a 2 night hospital stay around 36 wks bc of blood pressure. We've just agreed that pregnancy is just not for me and 2 kids is just right :)
I have looked high and low on the internet for a specialist in my area and i just am getting nothing. Doc is supposed to call today to chat about options so i'll be asking about Lupron... i really don't want to be on it at this point unless absolutely necessary. I have never been on a continuous BCP so i will definitely be asking about that. Not having a period would be HEAVEN. I am fortunate that my pain level isn't such that i cannot work... i only have 3-4 down days during my cycle and fortunately i can work from home if needed.
I'm sorry for not thanking each and everyone of you individually as i have to run but your support is absolutely wonderful! No one seems to quite understand exactly how miserable i feel many days. i wouldn't wish it on anyone but having someone understand is priceless.
I'm also a member who has a ton of endo, none was removed. I have taken the birth control pill continual for 10+ years. it's because of the pill and diet changes that I can live a normal life. I have no endo pain. The only thing I have is the odd episode of break thru bleeding but that I can deal with. I'd also never try lupon if the pill didn't work for me, I'm too scared of that drug and it's not somethign you take long term. I never understood it. You take it for a short time and then lots of times, people still feel bad and have pain so to me, what's the point ya know?
If your doctor is still ramming lupron down your throat, i'd find a different doctor. I read alot of times doctors are getting kick backs for putting people on that drug. Find a pelvic pain specialist in your area or a doctor specializing in endo. It's YOUR body and YOU call the shots.
But, I'm very pro birth control pill, it's made a world of difference for me!
Best of luck!
Hang in there- I hope that you get some answers and relief soon. xoxo