Self diagnosis looking for solutions - Endometriosis UK

Endometriosis UK

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Self diagnosis looking for solutions

AshleyEngineer profile image
7 Replies

Hello! I recently stumbled upon endometriosis and I have so many symptoms I'm convinced that I have it. I've always complained to the doctors about period pain and cramps but they just say to take more pain medication... Last month was the worst yet. I tried to get up and go about my day but the pain and nausea was so bad that I had to crawl back into bed crying! I have a very high tolerance for pain but it is out of control. I've also been getting more and more cramping during ovulation. Symptoms:

Frequency/urgency of urination

Shortness of breath (just standing there sometimes!)

Horrible cramps during first 2-3 days of menstruations

Cramping and bloating almost all the time now

Weight gain (only slight so far)

Fatigue

Feverish during periods

What do you for it? How did you get diagnosed? I've never heard a doctor suggest endometriosis but it seems like my symptoms fit the bill and warrant testing. I'm in the US so maybe the doctors here aren't eager to diagnose it... No idea. I just ordered "endovan" and REALLY hope it works. I'd love to avoid surgery and dealing with doctors altogether. Has anyone used that and found that it worked (or didn't)? I'll post again after I've tried it. Their web site says if you don't see improvement in two months you can get your money back so I'll let you know if that happens too... Good luck to all of you!

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AshleyEngineer
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7 Replies
Aug6Rose profile image
Aug6Rose

In the U.S. where I'm from I wasn't diagnosed until I was 37 years old & the reason they found it was that I couldn't get pregnant & had multiple tests then an ultrasound. Despite of complaining of extreme PMS, pain and heavy bleeding for many many years -all gynocologists said it was "normal". it wasn't, and now the endometriosis cyst was as large as a grapefruit & I had excruciating pain. They tried laparoscopy w/o success then laparotomy & then had to staple me shut because my cyst also was infected w perotinitis. I was devastated to say the least...

AshleyEngineer profile image
AshleyEngineer in reply toAug6Rose

On my goodness! Sounds like they need to start looking for this before we try to get pregnant! I'm sorry you had such a horrible experience. 😞

Aug6Rose profile image
Aug6Rose in reply toAshleyEngineer

Yes! Don't waste any time. I am fortunate to of have found a wonderful surrogate and hopefully next year sometime I will become a mom.

AshleyEngineer profile image
AshleyEngineer

Hi, I noticed that some people had followed this post. If you followed to see how my trial of endovan was working, it's here:

healthunlocked.com/endometr...

Hopefully that link works...

Jaydex profile image
Jaydex

If you ignore doctors, you could end up with having a hysterectomy. Not to be negative, but its possible. I try to ignore the same, but now I'm in serious trouble with my health!

Self diagnoses isn't really a way to go either, it could be severe or nothing to worry about.

Please go get yourself checked out, it took me years to get diagnosed and the disease has gotten so bad there wasn't a way to ease it, but with continuous surgery. Please don't put yourself through what I've gone through :( It's pretty much destroyed me. xx

AshleyEngineer profile image
AshleyEngineer in reply toJaydex

Thanks for the advice! I've tried going to doctors but my story is pretty similar to several others' I've seen on here.... they refuse to listen to you! Mine just keep saying that it's "normal" and to take more pain medication... If I knew I could go to some specific doctor and get diagnosed, I definitely would!

Do you know of anyone who has been able to avoid a hysterectomy by seeking some other treatment from a doctor? My research just shows that these lap removals have to be done over and over again, since there really isn't a cure. If I saw that something was actually available as a cure, I'd start trying to go to doctors again. Right now I'm just happy to have found something that I can take without a prescription that eases my symptoms.

Thanks!

Jaydex profile image
Jaydex

You're right, doctors don't really listen or tend to do anything about it!

Just keep pushing and pushing them. When your pain gets really bad, call a paramedic or an ambulance, they'll probably check you out or at least refer you to a gynaecologist...

It sucks so bad there isn't a cure as it's a terrible disease to live with, but medical professionals don't know enough about it to get some answers.

The disease can ease with surgeries, but mine grows so quickly I have surgery every other year. Its not nice :( Especially with how much it scares my little girl seeing me with tubes coming out of my body.

Get a doctors appointment, say you cant cope with it anymore and ask to be referred to a gynaecologist?! All you can do is annoy them too much to ignore you anymore.

(even exaggerate a little for them to pull their finger out)

Let me know what happens chick!

xx

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