Extremely discouraging gyn visit/Lupron (endo)

So, in a nutshell, my doctor doesn't believe in surgery for endo and told me it's a chronic problem I'd have to get used to if I have it (which she seems to think is the most likely cause, I guess?). She also told me I'm already on treatment for endo so if I do have it they can't really do anything more besides Lupron for 6 months. she said lupron doesn't work very well for the pain and I'm going to have to deal with it.

I'm in so much crampy period-type pain on depo provera that I'm crying... it could be worse but it's a 6-7 and creeping up daily. I can *deal* with it, but I can deal with a lot and I don't want it to become something I can't deal with!

When I asked about sex, I got more of the "you'll just have to deal with the pain somehow" (I guess not having sex?). So now I feel even more hopeless than before.

I think she's a great gyn and is probably right but the idea of just living in pain again and not having sex for years to forever is enough to make me want to give up.

I have to get another ultrasound as soon as I can muster up the strength (I know it'll hurt like a ********** for me!). What do you do for endo pain? Flexeril used to work really well for my thigh/back spasms and I'm considering asking for a TENS unit. if my gyn isn't going to really do much to try to eliminate the cause of the pain, I really feel like she needs to help eliminate the actual pain as much as possible.

Well, I don't have endo, but that sounds like a bunch of poo to me! There is NO WAY you should have to "live with it". Get a different doctor. No offense, but this one stinks. And you can't see endometriosis with an ultrasound. The only way to diagnose it is by literally looking inside. No one should have to live in pain.

You have my sympathy, I feel so badly that you hurt and this doctor basically blew you off. You really need another opinion. I wish you the best.

I asked her for better pain relief but I probably won't hear back from her until Monday. =/ Ah well.

I'm so sorry you're feeling so rough, and as much as you say you have a 'great gyn'... that wouldn't be my opinion at all based on what you've written here.

I had a doc tell me it was "just" chronic pelvic pain (although that didn't seem to explain the ridiculous periods!) I was given the 'you'll have to deal with it' line - and for a while, I felt exactly like you - I wanted to give up, because the effort of trying to explain to somebody was too much when I had enough to deal with just getting through the day.

I'm glad I didn't give up; I found a truly great gyn, who listens and helps me control the pain whilst I wait for surgery. If I were you, and this is just my humble thoughts on it, I would be getting yourself a second opinion.

You deserve better. Your relationship and your life deserve better. You should not have to deal with that. Take care of you.

Thanks! I sure wish I could get a second opinion, but I can't afford to right now (insurance covers all the copays with this doctor). =/ My gyn basically said no one would do a full hysterectomy and that surgery wouldn't fix it... it's a chronic problem and whether I get it done at 21 or 31 it doesn't matter-- if I'm going to have it creep into my bowels and/or lungs at age 35, it'll do it even if I have surgery now to get rid of it. Is that really true?

As far as I understand it, removal of the ovaries would help solve the endo problem (as it's the hormones produced by the ovaries that triggers the endo). I'm surprised your gyn hasn't even suggested doing at least a laparoscopy to have a look and confirm what she suspects. If you are in your early 20s then she may be reluctant because of your age (I had that problem) but she should at least have the guts to say that's her issue! Keep asking questions and don't give up - if you have to stick with that doc then at least make her understand you're not going to be happy with the 'just deal with it' line. Oh they make me mad!

I am not an expert but I know endo has to all be removed from everywhere to treat it and that's the key---getting rid of all of it. Having a hyst but leaving endo behind doesn't cure things at all. Finding someone who is skilled at removing all the endo is what you need, and you don't seem to have that. Endo specialists do exist, or skilled GYN surgeons, not OB GYN, or maybe GYN oncologists are Drs to check out as soon as you can. Lack of pain control and compassion is a real strike against your Dr in my thinking---live with pain? Why? Look into other Drs or other insurance, seriously, as she is doing you a disservice. You deserve more here and I hope you're able to arrange a change of care soon.

My mother had endometriosis about 32 years ago and had a TVH/BSO at that time. Her doctor was good and he was able to get all the endo out. She has never had another problem, ever. She said afterward she felt like a million bucks. So what greyown said is true. It can be gotten rid of. There has got to be more than one doctor that your insurance will pay for. You should really look into it. You do deserve more than this.

Thanks, everyone. <3

	Quote:
Originally Posted by Lollie-82 I'm surprised your gyn hasn't even suggested doing at least a laparoscopy to have a look and confirm what she suspects.

She said laps are useless because you can't really do anything for endo anyways, so unless you're having surgery for something else you might as well not bother.

She IS taking my concerns seriously, I guess, if she's suggesting lupron, but I guess with my complicated health issues she doesn't want to push aggressively.

I'm pushing her now about pain management... I don't care WHAT we do to try to fix the pain, I just want to be able to function again!

My best advice for you is to find another doctor ASAP. If your insurance company pays for this one and you continue living in pain and have to see her multiple times with no pain relief, are you going to come out ahead physically and financially? If you have a hysterectomy with her and your insurance pays but she can't remove all the endometriosis so you continue with the same chronic pain and have to continue with appointments and meds and future surgery, will you come out ahead physically and financially?

Diagnostic laparoscopy are done all the time to diagnosis AND treat endometriosis. Search the site and you find many, many, many of us who have had a lap to diagnosis and treat endometriosis. My OB/GYN did my first lap where he diagnosed and cleaned up as much endometriosis as he could. He also did my hysterectomy where he cleaned up more endometriosis but was unable to remove all of it. A couple years ago, I had a lap with an endo specialist to clean up the remaining endometriosis. I would have been ahead to have put out the money years ago and had my hysterectomy with an endo specialist who could have excised all the endometriosis at that time and saved me years of pain and medical expenses to treat that pain along with the need for the last laparoscopy.

So if your doctor is saying that laps are unnecessary for endometriosis, I believe she is completely wrong. And I can share some links with you stating she is wrong:

http://www.medicinenet.com/endometriosis/page3.htm#tocg

http://www.webmd.com/infertility-and...-endometriosis

http://www.endometriosis.org/endometriosis_surgery.html

http://www.adlap.com/PDF/endo.pdf

I can get you more if you would like!

It is true that a lap done by a surgeon who is unable to excise any of the endometriosis could be a waste of time. Any endometriosis that is not expertly removed with any surgery can continue to be a problem and a chronic pain issue. The key is to have any and all surgeries with a skilled and knowledgeable surgeon who can expertly an skillfully remove all the endometriosis implants found. As ((greyown)) mentioned, an endometriosis specialist would be your best choice but you could have success with a very skilled gynecological surgeon, gynecological oncologist, a reproductive endocrinologist, a surgeon who primarily treats women with chronic pelvic pain, etc. The most skilled doctors for endometriosis generally are not going to practicing obstetrics.

I am sorry you are living with so much pain and I hope you can find a medical team who can help you soon!