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.

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jess55 10/24/2016

Hi I am 20 years old I'm pretty much at a loss with myself. I don't know what to do.. so I'm seeking out someone to talk to.. I've been reading a lot about endo stories and none seem to match mine... so I thought I'd post and see if someone may be able to give me advise or answers. I apologize if this is long.. I haven't spilled out my feelings about this with anyone and I've only talked to doctors about what I've been experiencing. One Ob strongly believes I have endo, my PA wasn't sure if I have it, she told me to explore my options.. so I did, I went to another OB and she said it's possible I could but I don't have "all the symptoms" so she wasn't sure either. She said the only way I will know is if I get the lap surgery. (Which I'm trying to avoid as much as possible) so again idk if I should get surgery bc these doctors don't know if I have it and I don't want to get surgery done if it's not necessary. I've had many pelvic exams, several Pap smears. 1 ultra sound. STD blood tests. And a CBC blood test, they didn't find anything abnormal with me. But the pain still persists. Hasn't gotten any better or worse. My family doctor told me to not get surgery and just wait on it.... I don't feel like I'm taken seriously.. I don't feel like their putting much effort into trying to help me. And the pain is concerning me, it started out as a small sharp pain in my lower left abdominal area near my ovary/fallopian tube. This was in February earlier this year. A couple months later the pain and symptoms progressed. The pain isn't sharp, now it just feels more inflamed and hurts. Not to the extreme. Just moderate. It hurts more when I press on it.!It hurts through the month I do have days where it doesn't . But usually a week before my period the pain is stronger. The day my period starts it's brown for about half the day then it becomes heavy for the first 2-3 days. (Mine never comes on the same day each month it's usually a couple days off and lasts 6 days) but with the 2-3 days of heavy bleeding that's when it's the most painful and these symptoms only kick in around those days, cramping, pretty bad. Avil doesn't help one bit! I can' get up and move around but I prefer to lay down. I can somehow feel the pain going down my legs and reaching my toes. And also, this is going to sound gross but I really need to know if anyone has the same symptoms I'm having... but I also feel like my clitrious is being squeezed and pulled. And it gets super tender. I also have An issue with sex. Endo is killing my sex drive, and it's painful during intercourse. Only through deep penetration. The pain is the worst I've ever experienced. The pain is deep... and feels like a crampy aching pain. When I'm not careful with intercourse the pain usually lasts 10 to 15 minutes afterwards then it stops and I feel fine. I've mentioned all of this to my doctor and still they all seem to think it's not a concern. Besides one Ob that feels pretty positive I have it, he wanted me to get surgery asap. But everyone keeps telling me to wait and explore my options. And I have, but now it's up to me.. what I want to do. Well, anxiety really kicks in. I'm terrified of doctors , surgery, etc. it's not (white coat syndrome) believe me I take anxiety to the next level when it comes to medical stuff.. mainly I hate knowing there's something wrong with me... I keep thinking, what if it's severe? What if it's something serious? What if I'm going to die? What if they can't fix me? What if it's not endo, what if it's something worse? So many what ifs in my head and it's haunting me day and night constantly... it makes me stressed, sad, confused, deformed... I'm really at the point where I think I need to suck it up and get surgery so at least I'll know why I'm having pain on my lower left abdominal area. I feel like the longer I wait on it The worse it's going to get. And I want to have babies someday... I want to experience pregnancy.. I'm only 20 years old.... I just want to do what I can to know if this is what I have, how I can stop the progression, and how to manage the pain :( the pain is the main reason I keep thinking about it.

Mawtoyin 10/26/2016

Hi there. I can understand your frustration. Trying to get answers can be very stressful and long. Remember answers can be your power. I am 29 and I have just been diagnosed with Adenomyosis and very possible Endometriosis. The only way to actually 100% confirm endo is to do laproscopy. But there are others tests you can do to try to narrow it down. Have you had a pelvic MRI yet? I had one done and they found scarring in my pelvic region which is characteristic of endo. Endo also runs in my family so that was a pretty strong confirmation. But what they also found was Adenomyosis. Adenomyosis is considered the "cousin" of endometriosis because it is the similar effect endo has but affects the uterus itself. It also is something that could cause some of the symptoms that you are experiencing. The pain during sex and the tenderness when pushing on your abdomen can be symptoms. If you do have endo or adeno, or even both, it is not the end of the world (though believe me coming to that realizaton is hard). I too went through a lot of emotions (still am) about whether or not the pain can be managed, whether I need surgery in the future, or whether I will ever be able to conceive a child. But do a little research and ask your doctor if an mri or other tests can be done do get a better picture of what is going on before surgery. I am currently waiting for a mirena iud to help with the symptoms for both. And to be honest I'm nervous about it, but if it works I'm hoping I can get significantly less pain, less to no bleeding , and prevent more damage so that I can have a family one day. I hope that your answers come soon. The answers to what is causing your pain will lead you to the right path to managing and hopefully beating it. I wish you the best of luck in this difficult time. I hope you can get some good answers soon. <3

jess55 10/30/2016

Thank you very much for your reply! I have not had an MRI done thank you for telling me about that I'll talk to my doctor and see if I can get that in as well! But with adenomyosis wouldn't they know through a pelvic exam or ultra sound? I'm reading that your uterus would be enlarged or t shaped. When they did my ultra sound they said my uterus looked normal (perfect) in there words.

Mawtoyin 11/01/2016

My uterus appeared normal as well on my ultrasound. I was originally checked for pcos due to irregular periods. And an ultrasound was done and while looking at the uterus nothing appeared out of ordinary. It wasn't until I had the mri that they saw the evidence of adenomyosis. The measurements of my uterus are still normal. Which hopefully means it's early and the condition wasn't been wrecking having for too long. Its unfortunate but sometimes our bodies might not be "text book" cases. I hope adeno isn't your case but maybe the mri could rule some things out or confirm adhesions that could be from endometriosis. Perhaps the results can help you decide whether the laproscopy is a necessary step so that you don't feel like your doing it for nothing. Still wishing you the best of luck, I hope your answers and some relief come soon

VesnaP 11/03/2016

I so feel your pain :( I've been diagnosed with Interstitial Cystitis by a Urologist and then told I had zero signs of IC by another, who suggested I go to an obgyn to be checked for Endometriosis. I had a laparoscopy done and 3 lesions were removed - 1 on my uterus very close to my bladder which was believed to be causing me bladder pain too. However, only one biopsy from the smallest lesion was sent in and came back negative for Endometriosis. I have all the symptoms plus bladder discomfort/pain and pain throughout the month which flares during ovulation, 5 days before and during my period. Sex is almost out of the question. If I do try to have it it hurts, & then hurts even more the very next day. I can't seem to find a Dr who actually wants to see this through and so many of them just dismiss my pain and expect me to just deal with it. But it is TOO much. I swear it literally is zapping every bit of strength I have both physically and mentally. And to top it off, my husband of less than 4 months is fed up and is practically ready to walk out the door. My pain is more centrally located in my pelvis and feels like it's in my uterus and bladder. I also did have one ultrasound done that suggested Adenomyosis as well, but another ultrasound didn't show anything. I'm at a total loss and don't know what else to do. I haven't had an MRI done - probably due to it being expensive - but appreciate that suggestion as maybe that would confirm something??? Ugh this is so hard. The only way I've been able to semi control it is with Percocet but my Dr doesn't want to prescribe any more than what I have left - 2 days worth. I don't know what the heck else to do. Not to mention how many times I've been inappropriately profiled as a drug addict making up symptoms or even somebody who has a mental disorder who's conjured all of this up in my head. This is torture and I don't know what else to do or whom to turn to.

armywife15 11/12/2016

Girl I have been where you are!!!! It took 2 years for my doctor to say with confidence that I had endo. I was put through every test imaginable with no results. I even had the surgery with nothing found. I struggled constantly with wondering if it was all in my head, if I was crazy, and the fear of them finding something serious. It wasnt until I found a doctor who was willing to listen to me and my concerns, instead of nodding along for a few minutes, ordering test and meds, and sending me out the door. The best advice I can give you is to keep fighting for an answer! I know it is scary because of what they may find, but there is power in knowing what you are up against. Answers dont have to be a bad thing. An enemy you know is an enemy you can defeat. Having the surgery may be the only way to get some real answers. And once you have answers, you can start working on getting your life back to normal. I hope this helps!!

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