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, my name is Alyssa. I'm 27. I have not been officially diagnosed with endometriosis, but I've been told by 2 doctors that it sounds like I may have it. My OB/GYN wanted to do a laparoscopy, but I told her I wasn't ready for that just yet.
I've been researching endometriosis, and I just wanted to see if you ladies who actually have it could tell me if it sounds like it. My symptoms are:
Very painful cramps during my period, and usually a pretty heavy flow for the first few days. It normally lasts 6-7 days. My cramps laid me out this past period. It was so bad that my husband told me that I need to go to the doctor. I've always had painful, heavy periods, and they were only slightly less painful and heavy when I was on birth control. When I was a teenager it would get so bad that I would get light-headed and almost faint. I would never know when I would start bleeding. I had so many embarrassing moments I can't even count. I'd get my period, then 2 weeks later I'd be bleeding again. Then it would be maybe 5 or 6 weeks, then 3 weeks. It was crazy. I ended up going on birth control pills at 18, and stayed on them for 8.5 years. I spotted a lot while on them too. I think I tried every kind of pill available.
My cycles are kind of erratic too. One month my cycle will be 45 days, the next month it'll be 32 days.. then 40 days, then 35... It keeps going back and forth - it's never consistent. I have some pain everyday in my left ovary area. Some days are worse than others, but it's always there. Usually it's just a nuisance, but occasionally I'll get a sharp pain or a burning feeling. Like yesterday it hurt when I coughed or laughed. It starts to get worse about a week before my period. This last cycle, I started cramping exactly one week before my period came. It wasn't bad cramps but it was definitely noticeable. Then the day before my period came I got a really sharp, burning pain that kept throbbing... It felt like something was trying to rip its way out of me from the inside. That's the only way I can describe it.
Lately it's been starting to hurt on the right side a little too. Sometimes my hips ache all around from front to back, and sometimes even down the front of the tops of my legs (usually during my period or right after, or around ovulation). Going to the bathroom hurts. Sex usually hurts, and sometimes my abdomen aches afterwards. During my last pelvic exam, my OB/GYN said she felt "something," and it hurt like crazy when she was feeling around my abdomen during the exam. This month I've been spotting nearly everyday. Out of the last 18 days I've only NOT spotted for 3 days.
Things have gotten progressively worse every cycle since I went off the pills (6 cycles since April). I don't want to go back on them because my husband and I are trying to have a baby.
Does this sound like it could be endometriosis to you guys? I'm really hoping it's not... but I'm not very optimistic.
I've been researching endometriosis, and I just wanted to see if you ladies who actually have it could tell me if it sounds like it. My symptoms are:
Very painful cramps during my period, and usually a pretty heavy flow for the first few days. It normally lasts 6-7 days. My cramps laid me out this past period. It was so bad that my husband told me that I need to go to the doctor. I've always had painful, heavy periods, and they were only slightly less painful and heavy when I was on birth control. When I was a teenager it would get so bad that I would get light-headed and almost faint. I would never know when I would start bleeding. I had so many embarrassing moments I can't even count. I'd get my period, then 2 weeks later I'd be bleeding again. Then it would be maybe 5 or 6 weeks, then 3 weeks. It was crazy. I ended up going on birth control pills at 18, and stayed on them for 8.5 years. I spotted a lot while on them too. I think I tried every kind of pill available.
My cycles are kind of erratic too. One month my cycle will be 45 days, the next month it'll be 32 days.. then 40 days, then 35... It keeps going back and forth - it's never consistent. I have some pain everyday in my left ovary area. Some days are worse than others, but it's always there. Usually it's just a nuisance, but occasionally I'll get a sharp pain or a burning feeling. Like yesterday it hurt when I coughed or laughed. It starts to get worse about a week before my period. This last cycle, I started cramping exactly one week before my period came. It wasn't bad cramps but it was definitely noticeable. Then the day before my period came I got a really sharp, burning pain that kept throbbing... It felt like something was trying to rip its way out of me from the inside. That's the only way I can describe it.
Lately it's been starting to hurt on the right side a little too. Sometimes my hips ache all around from front to back, and sometimes even down the front of the tops of my legs (usually during my period or right after, or around ovulation). Going to the bathroom hurts. Sex usually hurts, and sometimes my abdomen aches afterwards. During my last pelvic exam, my OB/GYN said she felt "something," and it hurt like crazy when she was feeling around my abdomen during the exam. This month I've been spotting nearly everyday. Out of the last 18 days I've only NOT spotted for 3 days.
Things have gotten progressively worse every cycle since I went off the pills (6 cycles since April). I don't want to go back on them because my husband and I are trying to have a baby.
Does this sound like it could be endometriosis to you guys? I'm really hoping it's not... but I'm not very optimistic.
Maybe dysmenorrhea?
You should talk to your doc though, im just going to school for nursing so im no doc. Ive had endo since I was 16 and had all your symptoms. My right side is my bad side, it even radiates into my legs and back. The only way to truely diagnose endo is by surgury, usually laparoscopy.
Not trying to scare you! Just trying to be honest :-) But deff go see your gyno and see what they think. Hope things get better!
Take care of yourself! I wouldn't be hesitant to get surgery, as long as you are careful about the doctor that does it (making sure they know a lot about treating endo). You may feel a lot better after surgery!
Have you had any ultrasounds/imaging done? The left ovary pain, pain when coughing/laughing, hurting when the doctor pushed on it sounds a lot like a cyst. Cysts don't have to be endo but can be. That is how I got diagnosed is I had a persistent cyst in my ovary for several years. It wasn't symptomatic for the first year or so, then I started spotting all the time, having left sided pain, bloating, pain during/after sex, etc. Anyway, an ultrasound won't generally show endo itself but if you have a cyst it might give you some ideas.
I don't bleed too heavily, but some girls with endo certainly do. The other thing to consider if it's very heavy bleeding is adenomyosis which is basically endo in the muscle of your uterus. Uterine fibroids can also cause irregular & heavy bleeding (I have one so that might be part of my issue).
Anyways I think any of these conditions are likely culprits unfortunately. Fibroids & cysts show up pretty well on imaging, even adeno can sometimes be detected as an overly thick uterine wall. If you haven't done that I would take that step first. A laparoscopy is the only definite way to diagnose endo though so if everything points in that direction and you're as miserable as you sound I would go ahead with it (when you are ready). Just make sure you find a good surgeon who can excise the endo (not just cauterize) from sensitive areas.
One thing that was weird to me about this last period (forgot to mention it in original post)... it was very painful cramps, but the flow wasn't that heavy this time. I was certain I was losing a lot of blood due to how bad the cramps were, but I didn't. It was like I had just skipped the first 2 days of bleeding, but kept the cramps. I'm not sure how that factors in here or if it's even relevant, but I just thought it was weird. :-/
I know having a lap can help with trying to conceive if you have endo all over causing problems. I'm not sure if it'd be better to wait and see if you get pregnant naturally or get a lap ASAP though...I'll leave that to the ladies with more experience in the TTC department. Either way good luck and I hope you are able to get a diagnosis & start feeling better soon!
As for a lap...I cannot tell your age, and your photo doesn't tell me much (other than maybe we went to the same Sandals resort this year! :-)
If you are over 30 I recommend seeing a fertility expert first. My OB GYN wanted me to continue to try, but since I was looking for an endo speciaist, I went to the fertility clinic because they see a lot of people with endo, it's the leading cause of infertility.
They did blood work, checked my egg reserve, and did an HSG test to see if my tubes were healthy. They also gave me the option for genetic testing, etc., etc. and what they found was that my tubes were too damages by the endo to conceive naturally. I ended up having 3 surgeries in 6 months of time because I first went to my OB GYN, and then went to the fertility guy and they found more stuff.
I too don't want to scare you, but each laparoscopy can reduce your egg reserve in your ovaries and can cause scar tissue to grow in your pelvis. With my last lap, my right ovary is now stuck to my uterus instead of free floating like it should (darn ovary!).
So it's good to know what your baseline egg reserve is too. If you're running on fumes, you may choose to skip the lap for now and focus on baby making.
If your endo is too painful, or if a doc thinks they can repair your tubes (if they are blocked), or need to remove your tubes (to ensure you don't have a dragged out miscarriage like I did with our first pregnancy), then get the lap.
I'm now in my first cycle of IVF after having my tubes removed. They were both too diseased and would have caused toxic fluid into my uterus during a pregnancy. I have a good egg reserve, so the IVF doc thinks there is a very high chance we will get pregnant this first try so I'm excited. I may 'trigger" this weekend in which case I'll know if I'm pregnant within 3 to 4 weeks.
Huge hugs, hope you get some answers soon.
Thank you for your advice. I really appreciate it! I guess I'm going to have to start making a list of everything I've been told or read about this stuff and take it to my doctor with all my concerns and questions.
Yeah, at 27 you luckily have time on your side. With that said, this may mean it could take years to conceive. For me, I know time is not on our side and it's still taken over a year. Hopefully, you'll be one of the lucky ones with few problems, can conceive naturally, and it will just be a waiting game.
Here's hoping time stays on your side.
Thank you, and I hope it doesn't take years. It's only been a few cycles and its already killing me. It seems to be all I can think about.