endometriosis?

hunterli · 08-15-2002, 08:41 AM

Is it possible for me to have endometriosis and not be aware that I have it? I don't have particularly painful, heavy, clotty periods since I have taken Metformin, although they used to be heavier before Met. Intercourse is not painful either.

My Gynae is saying that my raised CA125 is most likely due to endometriosis, but I'm not convinced. I've got an appointment to see him on Monday, but I thought I would ask YOU first!

Lis

debshaw · 08-15-2002, 10:34 AM

hunterli,

i just had a LOT of endometriosis removed last month. i didn't have problems with my periods either but i had a lot of pain. very bad pain.

are you by any chance on bcp? the reason i ask is that about five years ago i went off the bcp for six months. at that time i skipped a few periods and i had an irregular pap done by my general practitioner. i also had some pain. my gp referred me to a gyn to have a procedure done (i can't remember the name) to see what was up. when i got to the gyn, my gp hadn't transferred my records and the gyn wouldn't do the procedure without seeing the pap. so she did another pap and said when she sees the results she'd decide what to do next. in the meantime, they started me back on ortho-tricyclene. the pap came out normal and most of my symptoms went away. i got married last august and went off bcp to ttc. all my pcos symptoms came back and i also started having the pain again. the pain got progressively worse. i went to a new gyn and was diagnosed with pcos in feb of this year and was referred to an RE who found the endometriosis. my RE think i've likely had the endometriosis since that last abnormal pap five years ago and never realized it until i went off bcp and the pain came back.

so long story short, i think it could be possible if your doctor thinks so. i think if i were you i would have it checked out because if you do have it and it keeps progressing, it can cause serious damage. i'm not sure how old you are or if you have children or want them, but endometriosis can cause severe damage to your reproductive organs and if it gets too bad, the only way to get rid of it is a hysterectomy. that's what happened to my aunt.

i didn't mean for this to be a book but i hope this helped. good luck to you, and i hope you DON'T have endometriosis!

hunterli · 08-15-2002, 10:39 AM

Thanks Debshaw!

I'm 37, I have two kids, I'm not planning to have any more.

I'm not on BCP.

Actually, for me I might prefer it to be endometriosis, or fibroids or...anything really, as the alternative reasons for a raised ca125 level are ovarian cancer or breast cancer

HISIRISHGEM · 08-17-2002, 12:52 AM

Please let us know how everything went when you find out!! In the meantime, I'll pray for you and your family!

hunterli · 08-21-2002, 04:43 AM

Saw the doc on Monday. Although my CA125 is raised, it still isn't particularly high. We agreed that I would see him again in 6 weeks, when I will have an ultrasound to check for cysts and repeat blood test done to see if the ca125 level has improved.

Lis

xx

HISIRISHGEM · 08-21-2002, 02:55 PM

Glad to hear that your being monitored. Many dr.s just let you sit there for awhile and stew. Makes me mad ......but it seems like your OBGYN really cares to find out.........I'll keep praying that nothing is wrong......I also have an appointment in Sept in order to find out if I have the same......I pray I don't have it either.

hunterli · 08-21-2002, 03:27 PM

Hi Hisirishgem

Good Luck to you!

I've been seeing my ObGyn since 1996, he diagnosed PCOS really quickly, and I successfully had two girls following ovarian drilling, so we have a lot of history, and I trust him! Also he has been prepared to prescribe Met even though I am not TTC, so he seems to keep up-to-date even though he is nearing retirement.

I used to see him as a private patient, but he has recently retired from private practice so I am now seeing him on NHS. So far, no problems with having to wait for an appointment!

Lis

HISIRISHGEM · 08-21-2002, 07:13 PM

Hmm, haven't gotten that far yet ...............tell me, what does ovarian drilling and what does it consist? Is there alot of pain?? I hear alot of cysters talk of it and some have had wonderful outcomes. Are you a slim cyster or heavy like me?? I'm about 90lbs overweight though most say they can't see it, I can definately see it!!lol

Anyways, I'll be going back in September to see what needs to be done....either d&c, etc.......not sure what the outcome will be really, because its been awhile since Ive been to an obgyn...at least 6 months which is a no, no.......but now that i'm in a new state I'm hoping i'll have a more educated obgyn.

Keep me posted!!

Luvn2stamp · 08-21-2002, 07:59 PM

My story is I was DX with Pcos when I was 16 doc. told me that I need not worry I just might have problems when I get married and try to concieve, but no problem she will just put me on meds. and that would be it. So I left there not worring about anything. I get married at the age of 24 start ttc right away nothing happeneds so I go see the doc. after 5 months and yes she put me on meds. The same day I asked her do you think it might be possible that I have endo. and she said no all I had was Pcos. So I left there thinking how can she tell me this without doing any tests. I became frustrated. I started taking meds. then my husband switched jobs and lost ins. So for two years no insurrance. Then he gets a job with the school dist. excellent bene. now so I go se another doc. he tells me right away sounds like endom. and he wanted to do lap. surgery. So with in a month I had that done and guess what I had stage 4 the worst you can get. It is all over the place. The weird thing is I never had any symptoms of it. No pain or anything the doc. couldn't believe it. So when he said I was one of the worse cases he has ever seen my hopes of ttc went down. He reassured me that it wasn't over for me just the begining to try to clean it up. So I had another surgery 9 months later. I had fibriod tumors taken, ovarian drilling, tubes cleaned, and endom. lasering. Man I got worked over...lol... Well, after that it took 6 months to the day to start my period. Then I had a normal one for 6 more months. 30 days ovulated for the first time in my life. it was very hopeful, but I here over a year later and still waiting. My last period was June 29th and I took a pgt. and it said neg. I don't know what happened to the normal but it really stinks. So now I'm waiting on an appt. with an endo. So short story made long to get around your question on endom. yes you can have it without symptoms. Do everything you can to get rid of it. The best way they say is to be preg. After they laser it it always comes back. I hope you get some good answers. Stay strong and ask a lot of questions and don't take no for an answer until you know for sure...Krysta

hunterli · 08-22-2002, 06:57 AM

Hisirishgem ...ovarian drilling is done under general anaesthetic by laparoscopy. The surgeon zaps as many of the little cysts as he can using a laser or diathermy. At the same time I also had hysteroscopy, endometrial biopsy, D&C and my tubes checked. I stayed one night in the hospital, as my surgery was done late in the day, but some people go home the same day. It worked for me, AF came 10 days after surgery, then again after another 56 days, and then I conceived on the next cycle. I am a "medium" size, 5'7" tall and 175lbs.

Luvn2stamp ... there wasn't any endometriosis when I had my lap done, but that was in 1996. I had another lap done last November to remove my gallbladder, the surgeon didn't mention that he had seen anything unusual, so my feeling is that endometriosis is NOT the cause of my raised CA125.

I'll just have to wait until my next appt and tests to see what happens next!

Lis

HISIRISHGEM · 08-22-2002, 02:23 PM

Were you hurting after all that?? I'm preparing myself as I think I may end up have that done soon.

hunterli · 08-22-2002, 03:07 PM

Not too bad, a bit sore for a couple of days, hospital gave me some pain killers.

Lis

HISIRISHGEM · 08-23-2002, 12:08 AM

Thanks for the Info!!