Nothing works, any other helpful advice?

Question

I have just about all of the symptoms of Endometriosis. the pain started in my mid-teens>>two years after starting my puberty; I first had a my period at age 14. And from 16 up to 22 my pain has increased and my periods became very irregular. Im starting to have nausea with my period. And I have a little bit of nausea between periods. Nothing helps me. My perscribed medication doesnt work. My pain lasts for 2 to 3 days. A scalding hot- bath which used to stop the pain at the first day doesnt work no more...period. I've tried to find gynecologist in my area that accepts medicaid and they dont. Im low on money. I really dont want to go to a clinic because all they'll do is get me on birth-control...which I've tried before getting a cardiologist' approval>>doesnt ease the pain. And I heard that birth control only stops it from getting worse...you see, I dont want to do that. I just want it gone and hoping that I can still have kids.

I ovulate right after my period and me and my fiance had sex a few times during that ovulation where he came in me and I didnt get pregnant. Can anyone help me???

Answer 1

Find yourself another gynecologist who takes medicaid. I dont know where you live, but email me and maybe I can refer you to someone I know. I have suffered from endometriosis since I was 17 years old. I started having cycles since I was 14... on my birthday!! Anyways it took until I was I think 24 for them to finally do something. They put me on every birth control on the market and nothing helped. They put me on pain medication and didn't help, finally I said...Laparoscopy please!!! It's a same day procedure, and they cauterize and remove the endometriosis that is present. After that is done you will probably have to go on a regimen of Lupron Depot, I am warning you, from my experience and the experience of the patients I come in contact with, this is worse then the surgery. Hot flashes, mood swings, your memory is crap, you have all the symptoms of menopause, you wanna cry all the time. It sucks but... it works and that's what matters. That medication (Lupron Depot) makes you have those symptoms because it depletes your body of estrogen, and endometriosis feeds off of estrogen. Birth control doesn't necessarily help it from getting worse, it may slow it down but, every time you have a period you have more endometrial tissue go up and into the pelvic cavity. Its awful! I feel your pain. Sex is painful, I get swollen, gassier, pelvic pain almost all the time, and during my period, the pain makes me throw up, break out in cold sweats, almost pass out. It has come back after 6 years after surgery and the treatment. I haven't had kids but, I dont know if I can :(

Anyways, medicaid should be able to refer you to a gynecologist. You need to insist on having a LAPAROSCOPY!! This is necessary to remove the endometriosis and properly diagnose it. You are extremely fertile after the surgery. I was told if I wanted to get pregnant to do it after surgery, but I couldn't at the time. So now, who knows.

Ask for a medication in the meantime called Ponstel. The indication is for menstrual cramps. It works for me. Take it as soon as you start your period. Dont wait until the cramps start! Its like a migraine. Don't wait until you have it, take it as soon as you see blood!!!!!

Let me know if you need more help, I know it takes time to diagnose. I'll do what I can to help.

My email is [e-mail]

Rosa

Answer 2

Check out http://groups.yahoo.com/group/EndoDocs for a referral near you. Ask the doc(s) you get referrals for if they can work with you on a sliding scale. You may also want to ask if the doctors works at a clinic or public hospital at any point; where you see him or her matters. If it's in their office, they can charge whatever they want, but if it's at a clinic they happen to volunteer or teach at, the fee scale is far different (and less). You can also call the Endo specialist's office; all of them often do a couple pro-bonos a few times a year. See www.drcook.com, www.endometriosistreatment.org and www.centerforendo.com. Call or write to the Endo Research Center to see if they have additional resources for you as well (www.endocenter.org). You can also try to enter a clinical trial. Those are free for patients and offer the latest therapies being tested. You can find one near you at www.centerwatch.com. You can also try drug therapy like Lupron, but without a diagnosis, it would be risky and irresponsible for any doctor to offer you GnRH therapy without knowing exactly what you have. Lupron is an option (not a very good one), not a required protocol, but if you wanted to try it despite the short-term effectiveness and long-term side effects, you can get on TAP's patient assistance program and get the drug for free or no cost. Put that option at the bottom of your list, not the top. See also http://www.endocenter.org/pdf/PreDiagnosisGnRH.pdf and http://www.endocenter.org/pdf/surgery%20vs.%20gnrh.pdf for more details on this empiric option. Also check out http://groups.yahoo.com/group/erc for help and support from others who understand. Good luck to you.

Answer 3

I am not a doctor, nor a female.

My (late) wife at heart, had endometriosis as well as polycystic ovaries. She had a number of surgeries to burn the endometrial tissue ( I think these are called ablations). From a surgeon's opinion in Australia in the early 90's she had the worst case of endo he had seen. It started when she was 12.

She was told she would never be capable of having children, and we managed to get pregnant twice (we aborted early twice, both times were a surprise and we were not ready for a child).

She was covered in hives after swimming at the local beach, and had an ablation scheduled. She was concerned about this, but they insisted on continuing with the operation (which she did). She got septicemia that almost killed her. The swore that surgery was not worth the risk in her mind, and she saw a more radical gynecologist.

The gyn asked her what her greatest fear was when hit with an attack. She said she got scared while doubled over in pain on the ground and onlookers helpless and clueless to provide any relief, as well as paramedics. Back then endo was not well known (it was put down to period pain until she was 23 from countless doctors and funnily enough an iridologist advised her to see a gyn ). She got a note from the gyn advising to give her a shot of pethidine when she was in severe pain, with his mobile number to ring to confirm it.

She was referred to a psychologist who was experimenting with pain management as a technique for endo sufferers, and when she went through her past, she discovered she had been subjected to psychological abuse from her family, and she had a a lot of things bothering her, and her stress levels were at the brink of insane, and she did 6 months psychotherapy to resolve her past as best as she could.

This was just before she met me and she got short milder pain for the first year, and was pain free for 7 years, and she ended up passing away from a brain tumor (like her adoptive grandmother, weird coincidence).

It would be ridiculous to say this is a cure that will fix anyone, and insulting to say that endo is all in the mind. But it would not be unreasonable to think perhaps that a stressed mind manifests in a physical form (like what was thought to have been the case with ulcers). I do believe it is in every endo sufferer's interest to at least look into this route as it is the least invasive path and definitely before a hysterectomy is considered.

She was the editor of the association's newsletter which she gathered information from the internet about endometriosis, and she attended some surgeries, and she was of the opinion that the tiny amount of endometrial tissue they ablate could not cause that much pain. That would lead me to believe their could be some neurological or psychological component to this.

The ethics in the providers of care for this illness must be questioned. This could be an unusual condition that does not have a pharmaceutical nor surgical cure, and the volume of money pushed in this direction is huge.

There are people that get only temporary relief from both hysterectomies, and it is an extremely drastic procedure. The same thing with getting pregnant. Although old drugs, synarel and depo provera gave her some brief relief (although with synarel the doc she saw prescribed a double dose for 3 months by mistake.)

Anyway some food for thought

Answer 4

as far as ur symptoms suggests ,it looks like you might have endometriosis.It is chronic conditn and need sot be treated with oral contraceptives.It might get worse if u won't follow it up.My sincere advice please get ur work up done and take medicans egularly.

abt the other q...u could get pregnant if it was the correc t time of ur ovulation...if its not 72 hrs ..take post coital pills,asking ur doc again...and please be careful.

Answer 5

http://www.kidshealth.org/teen/sexual_health/girls/endometriosis.html

go thru this site - there is tons of info

Answer 6

http://www.endo-resolved.com/pain.html

here's a lot of info