Slightly off topic, but as it can cause infertility, I figured this might be the best place to ask. If you want me to move this question elsewhere, please let me know.
If you have this, can you tell me about your symptoms and diagnosis - especially if you have bowel or bladder endometriosis?
After many years, I’m finally starting to put symptoms together and scheduling doctors appointments to figure out what is going on. I was diagnosed as unexplained infertility in 2015, and this was briefly considerd as a reason but I have many more symptoms bow. I know laproscopy is the way to diagnosis but I’m curious what happens leading up to that and if getting to that point involves excluding a host of other issues first.
Post by ilovecandy on Apr 17, 2019 10:32:16 GMT -5
I was only diagnosed after a laproscopy. There was never a reason to suspect. I like many women, just thought periods are painful. Now I know that while yes cramps can be uncomfortable they shouldn't be as bad as the pain I was sometimes in.
Mine mostly manifests as painful cramps but I have had some ibs stuff in the past year or two. Also I can tell it is growing back after they lasered it off in the lap because my periods are becoming more and more painful. I was couch bound for a whole week a couple months ago because of it my lap was done when I went and saw a new re after we moved just to see since I was diagnosed as unexplained in 2012 lap was done in 2015.
The only way to really diagnose this is with a laproscopy. I don't have any symptoms of endo by my RE was saying I could have silent endo and just not know. We went through a frozen transfer that failed and before moving onto the next round of IVF they're having me get a laproscopy and a hysteroscopy. I already have that scheduled for 3 weeks from now.
I don't really belong here anymore (although I guess I'm still infertile regardless of my divorce, lol), but I just had my second lap for endo, so I wanted to share my experiences.
The first time, I had endometriomas seen on ultrasound, at least one of which was fairly large and was causing a lot of pain, especially when trying to pee. Like I had to be completely bent over to urinate. Pleasant. I have also had a long history of pain in my bowel, in my vagina, extremely painful periods, etc. I had the first lap in 2016 and I had endo removed from a bunch of places - none specifically on my bladder or intestines, but a lot of things were adhered to each other that shouldn't be (fallopian tubes and ovaries to the uterus, I believe). I had a long history of spotting (like 10 years) and things seemed to clear up after that. The pain also decreased and I stopped getting random searing pain somewhere in the pelvic region.
In 2018, I realized some of my very obvious ovarian cyst/endo symptoms were coming back. (Aside from a short stint on clomid follow by an ectopic pregnancy, I've been on the pill since my surgery.) I decided to find a new MD who specialized in endo. The ultrasound didn't find anything remarkable, so she did an MRI (with a special endo protocol). There was evidence of endo on my ovaries, between the bladder and uterus, and some other places. So we discussed my options and decided on surgery. I had that done 3 weeks ago. I had endo on my ureters, ovaries (again adhered to my uterus), peritoneum, and in the uterosacral region (which makes me think that possibly my "running" injury last year was actually this because there were no bone or muscle issues on MRI). She also inserted an IUD as there is some evidence it may help slow or prevent it from coming back. I've also been having mid-back pain for the last 6ish+ months that I couldn't figure out, and my back was very sore in recovery, so I have a feeling it was the ureter endo (rather than just being "old" which was what I was telling everyone before my post-op visit).
There's a facebook group I was informed about the day after my surgey called Nancy's Nook. It's very informative and they have a select group of physicians they recommend. You want a surgeon that does excision, not ablation. I wish I had known about it prior to my surgery but I felt/feel good about the surgeon I chose.
In terms of ruling out other issues - it was just getting the scans. Even if they don't show anything, you can still have endo that needs to be removed. I really feel like a lot of getting an initial diagnosis involves advocating for yourself and finding an informed surgeon (if they suggest a hysterectomy or going on lupron, they likely aren't too well versed in endo - these aren't cures). I had to really emphasize my pain and the impact on my life before my first lap and I feel like my doctor was like, I mean you CAN have the surgery, but it's up to you. He sucked, so I should have run then but I needed the cyst(s) gone. It was easier the second time around since I have a confirmed diagnosis and I went to someone who I believe understands the disease better.
Anyway. There's my book. If you have any questions, feel free to PM me. Recovery honestly sucked, but I'm 3 weeks out and I went for a 3 mile run this week, so my life is slowly getting back to normal.
I have adenmyosis and often times it can go hand in hand with endo. I have insanely heavy and painful periods. I had to have an iron infusion back in December my hemoglobin and iron were very low. Often adeno can be seen and suspected through vaginal ultrasound. The only real way to diagnose is through hysterectomy.
I would also ask about adenomyosis as it can cause Infertility as well.
I’ve always had really painful periods. At one point I had a grapefruit sized endometrial cyst that was on my ovary, bladder, and bowel. I would get sharp, stabbing pains when having bowel movements and sometimes when urinating. I also have chronic diarrhea, which is worse during my period. The extent of involvement wasn’t visible on ultrasound even though the cyst was, so I would ask what imaging they can do ahead of time to get a good picture. They attempted to remove laparoscopically, but the amount of bowel involvement I had led to my bowel being perforated and them having to do an emergency laparotomy to repair. If you suspect bowel / bladder involvement, I would make sure to go to a very experienced surgeon. I would also request that they operate in a hospital and not an ambulatory surgery center — I had to stay under anesthesia until they could get a GI surgeon in to repair, then be transferred to the hospital after surgery via ambulance.
I had suspected endo because they could see shadows on my uterus and ovaries. I also had painful periods. I never had a lap but my second round of IVF they actually found endo in 2 of my eggs so they know its in my ovaries. I havent had any treatment for it but i had to do 4 rounds of ivf to be successful.
I had suspected endo because they could see shadows on my uterus and ovaries. I also had painful periods. I never had a lap but my second round of IVF they actually found endo in 2 of my eggs so they know its in my ovaries. I havent had any treatment for it but i had to do 4 rounds of ivf to be successful.
Both my OB and my RE's said you can't truly diagnosis endo without a lap. Chances are what they're seeing are a cyst.
I had suspected endo because they could see shadows on my uterus and ovaries. I also had painful periods. I never had a lap but my second round of IVF they actually found endo in 2 of my eggs so they know its in my ovaries. I havent had any treatment for it but i had to do 4 rounds of ivf to be successful.
Both my OB and my RE's said you can't truly diagnosis endo without a lap. Chances are what they're seeing are a cyst.
A lap is the only official way to diagnos but since their were bits of it in the actual eggs they took out of me the likelihood is very high that i have it and how many people actually have their eggs taken out and looked at? Not many and certainly not for diagnostic reasons. So can I 100% say i have it, no but my RE said the likelihood is close to 90% and thats good enough for me