Avatar universal

Endo? Waiting for diagnosis...depressed

Hi everyone,

I'm new and having a terrible time.  I'm being sent from doctor to doctor, and each one orders tests that I can't get scheduled for weeks. In the meantime, I don't know if this is endo, cancer, or something else potentially life threatening. Maybe some of you can share your ideas. Here are my symptoms (this is going to be long!):

-About one month ago, I started feeling what felt like a mild, vague pressure on my bladder. I felt like my bladder was holding less urine than it normally would, but I wasn't experiencing any pain/burning. I told my GP during my annual exam and she found nothing unusual during a pelvic exam. She recommended ultrasounds though, "just in case." It was about a week before I could get the ultrasounds.

-Over the next several days, the pressure on my bladder got worse, but still no pain or burning. I returned to my doctor right before the ultrasound and did a dip-stick urine test which showed trace lyce red blood cells only. The doctor said she believed that was an error in the test.

-I had the pelvic and TV ultrasounds. The TVU was definitely painful, especially when the tech was looking to the sides to try to see my ovaries, and when she was looking down toward my back. The USs showed no cysts or tumors, but did show a "moderate" amount of fluid in both cul-de-sacs, and a retroverted uterus.

-Over the next few days, the pressure got worse, but still no pain. My doctor said it could be endo or a cyst that had burst, but that there was "no other evidence" of a cyst bursting besides the fluid in the cul-de-sacs. At this point, with the pressure still getting worse, I referred myself to a urologist -- and my GP supported that. Of course, I couldn't get in to see a urologist right away. In the meantime, my GP ordered a urinalysis and culture through the lab.

-Over the next couple of days I started to have mild pain that came and went, in all different areas of my lower abdomen.  Sometimes on the left side, sometimes on the right, sometimes in the center. I also started to feel occasional nausea throughout the day. Now my GP had gone on vacation.

-The results of the urinalysis came back showing excess red blood cells and white blood cells, plus multiple bacteria that were "mixed" and considered to be contamination. I couldn't get an answer about the RBCs and WBCs because my GP was on vacation. However, an on-call doctor reviewed my records and said I needed to see a GYN because of the fluid in the cul-de-sacs. I scheduled an appt with the GYN, but can't get in until next week.

-I saw the urologist two days ago. She said the RBCs and WBCs in my urine are "very weird" for someone with no other signs of a UTI. She said I needed to schedule a cystoscopy "just in case."  (Just in case cancer, I assume.) I scheduled that -- and the earliest I can get one is three and half weeks from now. (!!)

-So, I'm now unable to do anything but wait, and my symptoms continue to get worse. I also started my period a few days ago. My current symptoms are pressure on my bladder (as if a hand is lightly squeezing my bladder, all the time), pressure in the rest of my lower abdomen (as if my bladder, uterus, and ovaries are all inflamed), serious (and unusual for me) menstrual cramping off and on, and nausea all throughout the day. When it's at its worst, I feel soreness and weird twisting feelings even just from walking around or turning. My lower abdomen feels "full" and sore, but I'm not showing much in the way of visible bloating. I have occasional stabbing sorts of pains -- sometimes on the left, sometimes on the right, and sometimes near the center of my lower abdomen.

Other background: I'm 41 and was on birth control pills for over 15 years, until I stopped taking them about six months ago. I'm not pregnant (doc confirmed with pregnancy test) and I've never given birth. I don't test positive for any STDs and have been married for a long time. My pap smear from two weeks ago came back normal.

What's making me really depressed about this is how the doctors give me serious looks when they review my symptoms, like they're concerned, but then they order tests that I can't have done for weeks. So...in the meantime I just sit here not knowing if I have something life threatening, and not knowing whether I'm going to end up in the emergency room before I can get a diagnosis. I don't even know how bad it needs to get before I go to the emergency room. And of course, during all of this, I have to worry about the mounting medical bills.

I'd love to hear your advice or ideas. Thanks so much!
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Avatar universal
Thanks, Clevelandgal! No, I'd definitely never thought of a fertility doctor, but I'm willing to try that if I don't get answers soon. Today I have an OB/GYN appt, and I have a cystoscopy scheduled in a couple of days with a urologist (I got that appointment moved up, thank God). I'm feeling a little less depressed now that I at least have some appointments coming up soon, which means it's possible I could start to get some answers -- even if it just means ruling out non-endo things. I'll report back. :)
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Avatar universal
Have you seen a fertility doctor? I went through many many doctors who claimed to know stuff about endo but really didn't...I went to the fertility doc even though I wasn't looking to have a baby because they were really the most specialized doctors I found on the subject. There is no scan or test that can 100% show you have endo...they couldn't find a lick wrong with me until they did a lap surgery...visualizing the endo is the only way to find it unless you have giant cysts...which i never did. So my suggestion would be...contact a fertility type doc instead of ob/gyn's etc..stay strong and demand action! You know your body better than anyone else...and I too get lot of weird bladder feelings...they've never been able to find a direct cause but i assume it's all endo related because when i get the pain under control the bladder stuff subsides...lots of things close together down there! And YES...depression is normal when you are fighting to convince docs there is somethign wrong..took me 2 years for a diagnosis..it's SO frustrating...hang in there! There are many of us like this out there! Reach out for help!
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