I have been diagnosed with endometriosis

[backtoblue]

and my doctor says that there's nothing he can do. He says that I'm too young for a hysterectomy and my insurance won't cover a hormone injection that costs over 500.00 per month. The lesions have spread to the outside of my bladder, which is causing horrible pain.

I've been on birth control pills for a long time and still get small ovarian cysts, which he says is caused from the endometriosis and not anything to worry about.

Why is this disease so damned untreatable and why do doctors act like the pain of it is not such a big deal?

[librechik]

1. get a different doctor--there is something you can do, I'm sure

that being said I had the same thing for 20 years and I wish I had gotten the hysterectomy at 30 instead of suffereing the agony I did for so long. That's just me, though. Find a woman doctor.

[backtoblue]

15. was there anything that seemed to help?

[librechik]

23. no, but i had bad doctors too.

My current gyno is great; the surgery solved the whole problem, and i didn't wind up taking replacement hormones either-- (allergy to the patches and then i wound up with mild menopause symptoms so it was tolerable, especially compared to the frequent horrible pain and bleeding of my endometriosis.)

but i was over 50 when i had the surgery. god, it was liberating. but i just try to not worry about the side effects of no estrogen.
your bones deteriorate and mood is crappy for example, but those can be fixed to a degree. Getting old is a natural process, after a certain age.

I'm sorry I wasted so many years tolerating the pain. Try to get someone to really listen to you about that. your doctor sounds like a jerk.

[RubyDuby in GA]

2. I had my right ovary removed because of endometriosis. It is treatable.

Get a second opinion immediately.

I lost my ovary because my first gyno (a fundie male - I didn't find that out until later) told me it was all in my head. Please don't wait any longer. Please go get a second opinion.

PM me if you want more info or to just talk about it.

On edit: I immediately got a female doctor and have had nothing but good experiences since then - including having a baby.

[backtoblue]

6. Thank you

There are no female gynocologists within about 90 miles of where I live. I have made an appointment at a highly ranked hospital, but they can't see me until August.

[eShirl]

3. I know little to nothing about endometriosis

But if my doctor told me all that, I would see another doctor.

"too young for a hysterectomy" .. that phrase just rings my alarm bells

[napi21]

4. I don't know much about the disease, but my cousin was diagnosed with it

a very long time ago. Money was no object for her and even though she received every treatment they came up with, nothing helped. She was told that after she went through menopause her condition would improve, and it did.

I would suggest you might want to try a different Dr. Also Check the internet to see if there has been any recent research and possible nrw treatments.

[bkkyosemite]

5. I had it for years than surgery. Get a different opinion!

[NC_Nurse]

7. That's bullshit. Switch Docs.

[backtoblue]

13. I've got an appointment in August

at a university hospital. I just don't understand what caused it and why the pain of it seems to be disregarded by my doc, my family, and some friends.

[MADem]

8. Maybe you should get yourself a female doctor.

I don't think there's anything wrong with getting a doctor who can speak to you about your equipment with an additional layer of understanding, simply because they have the same gear.

The "PC" approach that they guy should go to the woman doc for his plumbing issues, or the woman should cheerfully take advice about her cervix from someone who has never had one is just silly, IMO. Some people are more comfortable with someone of the same gender, and there's "value added" when the physician has the same stuff.

I think if your doc is acting like your pain is "not such a big deal," then your doc maybe needs to be replaced by someone who does understand pain management issues? And who maybe can do that surgery where they poke the tiny hole in your stomach and go in with the little choppers and vacuum?

I hope you get the help you need. No one should have to live in pain.

ON EDIT--I'd drive the ninety miles if it came to that, if I were you. Really. Make it a mini-break. Go in the morning, have your appointment, and stay overnight and maybe have a little fun--go to dinner, take in the local sights. Even if you can't stay over, your health is worth three hours in the car.

[enlightenment]

9. Too YOUNG for a hysterectomy?

If you had cancer would you be too young?

Your doc sounds like the one who told me that I shouldn't have a hysterectomy (at 28) to remove an organ permanently damaged in childbirth to end both debilitating pain and increasingly uncontrollable bleeding . . . because 'what if your son was killed in an accident?'

As if they're interchangeable - sure, doc, if that one breaks, I'll just make another replacement. With the organ that you've told me I should never use for that purpose again.

Prat.
Find another doctor - at least ask for a second opinion. There are more options - laser ablation, etc.
I'm sorry you're suffering; please find another doctor to speak with about your problem.

[Warpy]

10. "Too young for a hysterectomy?"

You need to fire his ass and get another doctor, one who will discuss your options honestly and provide you with some pain control should you choose to maintain fertility for a few years.

[backtoblue]

12. The reasoning is that it would throw me into early menopause

because he'd have to take my ovaries in order to stop the production of estrogen that apparently feeds the endometrial tissue. I don't think menopause would be as bad as what I'm having to suffer through right now. He will not prescribe pain medicine, telling me that taking ibuprofen is the best.

[Warpy]

17. I understand his reasoning

but he's a hardass or he's living in fear of the DEA.

If you want to preserve your fertility, then you need more serious pain control. There are options besides heavy narcotics.

Surgical menopause is awful, but so is living in constant pain. You need to find a physician who will address this honestly, not Dr. Motrin.

[Tikki]

11. I had my hysterectomy at age 27....

Endometriosis is nothing to mess around with...if you are in pain
you are in trouble.

Pain is not the normal existence for a woman's body.


Please see another doctor.


Tikki

[sinkingfeeling]

14. It certainly is treatable with a hysterectomy. I had endometriosis for years as well as an

ovarian cyst the size of a small grapefruit. It all went away with a complete hysterectomy.
Get another doctor ASAP. You could end up with no bladder control without having the lesions removed quickly.

[backtoblue]

16. A few years back

he said that I had interstitial cystitis of my bladder. That's some sort of inflammation that causes spasms and pain. If I do have a hysterectomy, will they have to remove the lesions off my other organs?

[Crunchy Frog]

18. Laparoscpic laser surgery can be very effective.

Would your insurance cover that? I had a mild case of endo treated with that 12 years ago, and as far as I know it's never come back.

There are also some alternative treatments that some people have found effective.

[Captain Hilts]

20. That's it. It REALLY helped my friend. DON'T have your girl parts yanked out this young. nt

[Captain Hilts]

19. Get those little beasts zapped. That really helped a friend of mine.

Men determine priorities in research. Sorry, but it's true.

[backtoblue]

21. I was told they would just come back

Then they should make endometriosis a priority because it makes sex very painful at times. (sorry if it's TMI) It's sad to think that they don't care. I can only imagine the responses I'd get in GD.

[Captain Hilts]

22. Yes, they can, but you'll have a couple of years with a whole lot less pain. nt