#but the chronic pelvic pain i've got going on wound up getting me to take advantage of my on-campus medical facilities | Explore Tumblr Posts and Blogs

terfslying · 4 years

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uhhh fat question time I know ur not my doctor and theoretically can't physically help me with this but ummmm ive had extreme vaginal and pelvic pain for like the last ¹½ year and I've been to the gyno several times and being dismissed as a yeast infection/sexual dysfunction. Last I went the gyno lady gave me Estrogen cream. And a couple months later my parents got drunk and to talking. only for me to find out most women in my dad's family and some in my mom's had endometriosis. 1/???

for context I'm approaching my 16th birthday and this started when I was 14 and became sexually active (Though I've always had bladder issues, UTIs and Kidney stones). I'm really worried it will take me a long time to ever find out if I have this.. and frankly.... I'm scared. I really would like your advice and some anecdotes from your experience as someone with endometriosis. 2/2

...

tl;dr because this is a long answer:

If a doctor tells you that there’s no reason for your pain so you just have to live with it, do not visit that doctor. If they can’t treat the cause, they can treat the pain. If they’re not doing either, they’re pointless.

There are MANY treatment options for you, endometriosis or not. You will not be in pain forever. You may have to advocate for yourself in order to get a doctor to help you, but there are a LOT of options if you know what to ask for.

I also started out with mainly bladder issues / UTIs (no kidney stones though) so we might have a lot in common there. My bladder issues were also exclusively triggered by being sexually active and I spent a couple years being told to “just not have sex” which I suspect is what you’re getting told.

Frankly, if a doctor is telling you “oh you’ve been in pain for over a year? Hmm well too bad, maybe just don’t do that specific normal human action ever again”, that is a BAD doctor. Do not settle for that doctor. Get another referral or request a different one or do whatever you need to do to see another gynecologst. Continue that process until you have a doctor who is telling you, “here are your options to treat this problem”.

Meanwhile collect information on your symptoms - journal or use tracking apps. I use Clue for tracking my menstrual cycle and I used to use Symple for tracking my symptoms. The more records you have, the more you can insist on the doctor investigating, and get past the view of you being “just a young girl with bad periods / sexual dysfunction”.

Endometriosis can make it very tricky to find a good doc so if you can find an online support group or facebook group for people in your area, you could ask for some recommendations.

Don’t accept doctors telling you ‘your scans show nothing, so there’s no reason for your pain, so we can’t help you’. If your scans show nothing, they need to physically go and look. Exploratory laparoscopies are for that - they’re keyhole surgeries, so it’s not that invasive and it’s about 2 weeks for recovery.

For bladder stuff there’s more tests you can do to rule out issues, and I suggest you also follow that up if possible, because those are easy fixes if it turns out to be the case. You can get a bladder emptying study (you drink a heap of water about 40 minutes before the appointment, then get an ultrasound before and after you pee). You can get kidney and bladder ultrasounds to ensure that your anatomy is normal and not causing issues. You can get cystoscopy (like a catheter with a camera) to check for cancers and actual physical lesions, ulcers and wounds.

And if they do ALL THAT and there’s nothing wrong with your bladder, and no endometriosis has been found, there are STILL things you can do for treatment. Look up “interstitial cystitis” or “bladder pain syndrome” - it’s a very painful chronic bladder / pelvic condition. It can be caused by or associated with endometriosis - and there are a LOT of treatment options, ranging from cutting out acidic foods, to using TENS units and low-dose antidepressants for nerve pain, to physical pelvic floor therapy, so on, so forth.

I hope I haven’t overwhelmed you with information. Feel free to ask for more advice always.

#tag for asks

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