Getting diagnosed

[desertkelp]

I am 40 years old and have dealt with chronic pelvic pain for years. I am in the US, but I enjoy this forum and I hope it's okay to post here. I'll give you a bit of my history. In 2017, I had several uterine polyps removed. At the time, my surgeon wanted to explore for endometriosis, but I could not afford the full procedure, so I only had the polypectomy done. I ended up getting several months of pelvic physical therapy as well, which did help some with painful sex. In 2019, I got pregnant, but unfortunately suffered a miscarriage at ten weeks. Since then, my pelvic pain has increased in severity and frequency each month.

I had an ultrasound and pelvic exam this past January, and they noted a new fibroid and a new polyp, as well as a "slightly thickened" endometrium, but they could not see any signs of endometriosis on the ultrasound. My new doctor seemed to blow off possible endometriosis, and said she would offer to put me on an estrogen-based birth control pill for three months to see if this affects the pain. If any improvement was noted, she would proceed with whatever treatment options they have for endometriosis.

I have been afraid to try the estrogen-based pill because my understanding is that estrogen worsens symptoms of endometriosis (and other issues). My doctor said she doesn't believe I have endometriosis because most of my pain happens around ovulation and not during my period, and wanted to send me to get my bowel checked. I had a colonoscopy in 2018 and, aside from benign polyps, it was normal. And I've read that endometriosis pain can happen at any time. These are the symptoms I experience each month, sometimes all month, but almost always during and immediately after ovulation:

Pelvic pain (stabbing, burning, or aching across the entire pelvic area)

Bowel pain

Constipation

Gas and bloating

Hip, thigh, and knee pain

Fatigue and malaise

I also experience occasional pain during bowel movements, almost like a tearing feeling. There was even a day at the gym a few months ago when I was doing thigh exercises and had this pain. When I tried to squeeze my thighs together with the machine, I felt like my pelvis was ripping and I had to stop. I told the doctor all this, and she just repeated that she would have to proceed with the estrogen pill, and that she would advise me to get an appointment with a gastroenterologist and a urologist. This is the same practice where they suspected I had endometriosis three years ago, but now are acting like it's not related and I'm exaggerating.

I am extremely frustrated, and unfortunately, this is the best women's care facility in my city. There are various reasons I do not want to go on an estrogen pill, but I am also not sure what else to do. My communication with that doctor came to a halt in March when the city shut down for the pandemic, and they were only seeing emergencies and pregnancies; but after a summer of nearly continuous pain and anxiety, I am ready to talk to her again. Has anyone had similar experiences getting diagnosed? Does an estrogen pill sound like the thing to try? Are there other options I could suggest? I need to do something. The pain makes me crazy because I constantly worry that something serious is happening, but so far, tests have found nothing other than the fibroid and polyp.

[Moon_maiden]

Hi

A second opinion might be a good idea. I have several of the symptoms you’ve listed. Bowel issues, abdominal and pelvic pain, etc. I’m not sure how they can rule it out so easily as the main way to see is laparoscopy. I thought they were far more receptive in the US to this, there’s some great information on sites.

What other tests have you had? Rarely does on ultrasound.

[desertkelp in reply to Moon_maiden]

Thank you for the reply. So far, they've only done the ultrasound with pain-mapping and a standard pelvic exam. They checked for ovarian cysts as well, but found nothing other than the new fibroid and polyp. When I saw the surgeon three years ago at the same practice, he wanted to check for endometriosis, but like I said, it was so expensive to get the laparoscopy that I declined. Now, I wish I'd just gone ahead with it. The new doctor they've assigned me to is very dismissive of my symptoms, all because they're strongest around ovulation and not my actual period. I am not sure how easy it will be to get a second opinion as this is the main women's specialist in town with the best reputation. But I might need to try. I'm also thinking of trying to tweak my diet. I believe caffeine may be a trigger.

[Moon_maiden in reply to desertkelp]

No doctor should be dismissive, can you get assigned a different doctor. Trying to get anything diagnosed is virtually impossible if the doctor ignores you, just ruins your confidence.

Let us know how you get on.

[desertkelp in reply to Moon_maiden]

I'm looking at different doctors at the practice and at others around town. My options are limited, but I'm hoping I can see a doctor I saw several years ago when I was diagnosed with polyps. I believe she may be more receptive to what I'm experiencing. The doctor I'm seeing now is very new and young, and I originally thought that would be a good thing. They tend to be more up-to-date and open to ideas. But this one just doesn't seem to care.

[Moon_maiden in reply to desertkelp]

Good luck let us know how you get on.

Like anything else very much on who they are as a person regardless of age.

[desertkelp]

I wanted to add that I am about 10 days into my current cycle and due for ovulation in about three days, according to my cycle app. I am having pain today and also some light spotting. The pain started earlier than usual this cycle. Normally it comes closer to the day of ovulation, but this time, it started shortly after my period. It seems to be more unpredictable lately, but no less intense.

[Claires-78]

Hi, I don’t have endometriosis, but have numerous fibroids & I suffer with all your symptoms. I know even small fibroids can cause women problems, some drs (not mine, I’ve been very fortunate) don’t believe there’s a link between fibroids & these symptoms but there 100% is. So what I’m trying to say is, you may not have endo (hopefully it’s not) it could be the fibroids causing all your issues? X

[Moon_maiden in reply to Claires-78]

Interesting you’ve said this, the endo is causing some issues, but I’m convinced the fibroids are playing their part, apparently it’s an enlarged uterus with numerous fibroids, but everyone says they are too small to cause issues.

Have you had any treatment for yours?

[Claires-78 in reply to Moon_maiden]

Yes, I had UFE last sept which didn’t work, so I’m now currently on prostap injections for the next 3 months & I’ll then be having a partial hysterectomy.

[Moon_maiden in reply to Claires-78]

I’m not finding the Zoladex injection is making any difference unfortunately. I’m hoping they’ll take the lot out.

I hope the injection helps you with op.

[desertkelp]

When they told me I had a new fibroid, they just mentioned it in passing like it wasn't a problem. They said it wasn't that big. No one ever told me it could cause pain. I will look into it, and if I am able to see my doctor again soon, I will ask about it.