New here, have been scrolling through this entire site for weeks now. I’ve have been dealing with terrible pain, and tons of symptoms, and have been tossed between doctors for well over a year now.... a friend of mine suffers from Endo. And I’m wondering if I have the same.... the long and short of my symptoms.....
My period cramps have always been rough, but I always assumed everyone dealt with it... about a year ago, I just started peeing more than normal. No pain, but every 2 hours or so. I had to run, quickly, to the potty. Then a few months later, it turned into terrible terrible cramps, randomly through the month. And I would always have a bowel movement. Right around the same time, I started getting extreme menstral type cramps, about 3 days before my period came... I would be in fetal position for hours. Or hiding in the bathroom at work, to suffer. As time goes on , I developed pelvic pain every single day, like light cramping, pain after orgasm for a day or two, and I have pain among any deep penetration during sex, tampons are very uncomfortable most periods, it feels as though my insides have been rubbed with sandpaper.
I’ve been told IBS, IC, anxiety... CT scan showed cysts, in which an ultrasound showed no cysts just 3 days later. Bloodwork , stool sample, urine sample negative for everything... sorry it’s so long, getting desperate for answers.... no doctor has even uttered the word endometriosis. Follow up this Thursday in which I’m going to ask
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Bnb1991
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Oh and to add, I had a period in which i was getting periods every two weeks, then put on the pill to fix. Worked for two months, slightly helped probably i “think” (possible just in my mind it helped , who knows”) then went 3 months without a period. And my belly is bloated, and I look pregnant now 🙄😫
i mean it definitely sounds like endometriosis. its strange that the ct scans are coming up with different things. have you had a transvaginal ultrasound? you have them at a gynaecologist appointments. thats how they discovered mine.
I did , I actually had two of them. One in Jan, and another right after that CT scan. My doctors response to the difference was very nonchalant, like “who knows what they saw” I also found out last night both my aunt and grandma have been diagnosed with it as well.
its strange you seem to be doing the right thing. although im not entirely sure how good imaging techniques are if you dont have an endometrioma. can they pick up the small tissue growths? i know that the only fool proof way to know if you have endometriosis is a diagnostic laparoscopy, which you can push for. but you will have to decide if you want to have surgery to be diagnosed.
i think maybe getting a private consultation with a endometriosis specialist is the best bet as youve already had so many tests im not sure what else they can do.
Aww, sorry to hear you've been through so much and docs aren't helping.
You'll need to push to see a endometriosis specialist or at least one that deals with irregular periods etc. This could be NHS (if UK) but the wait times are horribly long, or private. I've heard it can take months on the NHS to see a specialist and then months for a diagnostic lap, then months again for treatment (often another surgery). I went private through my work health insurance - referral to diagnostic lap to treatment of my endo via excision was about 2 months - happy to message and talk about it.
You ideally want a laparoscopy to see what's going on inside and see if they can take biopsies, remove / fix anything they find, if they can include a hysteroscopy (view up vagina and uterus, that would be good too.
CT and ultrasound and different as are MRI so they pick up different densities, they won't see the same stuff as they're not designed to. You won't be able to see any endo (unless scar tissue or large enough amounts) on scans that's why a lap is the only formal diagnosis.
It's annoying that we have to say what we want done / path we want for diagnosis
Make a note of all your symptoms - have a page a month, and put on it your periods (breakthrough bleeds if on hormones(, symptoms, ovulation (if not on hormones), any spotting, any pain meds you take, when you had sex, etc, you get the idea. It helps map out what's going on and it's good prep for seeing a specialist or just shoving it in-front of your doc to get them to pay attention.
Sounds like endometriosis for sure!!! Laparoscopy the only way to diagnose it. Ultrasound not sensitive at all. CT won’t show it. CT HOPELESS FOR pelvic disease. So it does not matter the tests you have had. That story is the story of endometriosis . Progesterone tablets can help if the pill has not helped. Eg primolut 5 mg daily. It’s a safe thing to try but I guess if you want a definite diagnosis push for a laparoscopy with an endometriosis specialist. Some gynaecologist who don’t specialize in endo can miss it when they do a laparoscopy as it can be subtle . So make sure if you have a laporoscopy you have it done by an expert in endometriosis and not a general gynaecologist.
Also 80% of women woth endometriosis have been told they have irritable bowel syndrome before someone realises its actually endometriosis causing the bowel symptoms.
Thank yall for your responses, I actually got the info a for endo specialist near me, I am going to request an lap at my next appt... if it works out that it is, in fact endo, Im going to be right sour that I had to diagnose myself via google... I had to really scour the net for stories of endo and tummy troubles, that the only symptom that doesn't seem as common... having my fingers crossed that I can get diagnosed and treated soon... I don't know how people deal with this for years- also important note, not UK, sounds like things can move a little slow over there though!
Update / went to the doctor today. Before I mentioned it, she did exam , and at the end asked me if I’ve ever heard of endo! Having my lap in a few weeks. And she’s pretty sure that’s it... I cried right there because there might be hope to feel normal !!
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