Endometriosis?

JodyGirl · 02-20-2003, 01:18 PM

Does anyone here (besides me) have endo? I ask because I am in an extreme endo flare-up right now, with really, really bad pain and incredible bloating, and I'm wondering if I should take Tylenol or something for the pain/inflammation and if that helps. My GP is completely useless in these matters, and I won't get to see a gyne till SEPTEMBER!!!! (fume, grumble)

What happened was, I had some right ovary pain (could be the PCOS or, I also have some endometrial growth on that ovary) and it wasn't too much, I was able to deal with Tylenol (can't take ibuprofin b/c I'm on Celebrex for the RA - what fun) and a hot water bottle.

Then last night, I must have turned over strange in bed or something, but I was racked with pain from pubic bone to belly button! I was groaning so loud I woke dh up, and he wanted to take me to the ER. Today, the pain isn't nearly as bad, but all my insides feel like someone has been poking at 'em with a bbq fork.

What do other Cysters do for this? Going to my GP is useless - it's like a ten-day wait for an appointment and then I'd have to sit on his hard office chairs for up to two hours, just to get in to see him. I have endometrial growths in my rectum (TMI!!! Sorry!) and I just can't sit for that long. Impossible.

Any suggestions are welcome.

Pattyannruss · 02-20-2003, 04:00 PM

Hi,

I feel for you.

I too have endo. I just had my Lap done Jan 21st.
He said it is very extensive along with severe amounts of scar tissue. One tube has been totally disinigrated from the endo.
He said my cystic ovaries are real bad right now too.

Mine is so bad I have had a problem with peeing tissue since last summer. In other words I have a UTI monthly as AF is due and for about a week after. So I get about 1 week a month that is tolerable.(Not with out pain though)

I have constant pull/throb in my right ovary.
I have a hard time standing. I'm on my feet 8 hrs a day!
Back, pelvic, Vag and ab pain all the time.
My hormones are out of wack, even on BCP and GlucXR.
For pain I baby back Tylanol and IBpro.

I say make an appt with your GP.
Ask if they have another form of antinflamitory available that you can take with your other meds. Ask them if they can start treating until you can get into that GYN. If not then def take Tylonal every 4 hrs the 4 or 5 days prior to AF, clear thru until AF is finished.
Don't let up on it or the pain will catch up to you.

Your GP can also order all the tests.but GP are more apt to just do the "Watchful Waiting Period" with you.
You must demand treatment when they fail to offer it to you.
research all the options, make your decision of what you want done then tell the Dr that.

As for that GYN....Is that the only one available?
Can you get a referal to a diferent GYN?
Tell them you will do the calling if they could just do the referal.

7 months is a very long time to wait when your in pain.
As a matter of fact, stretch the truth a bit more. Keep telling them how much pain your in.
Don't back down.

Call that GYN office and straight up say "I need your help. I have a referal but that appt is not until September. I am in severe pain and I need help Please!"

They may squeeze you in sooner.

For me, I am having my hysterectomy in April.
I am so done with it all!

I am luckier than most with endo. I have not had to suffer for 10+years waiting for someone to take care of it. I look back and I figured my condition got bad 3 years ago.
But I did not know to look for endo until Dec of 2002.
I got in first of Jan2003, Lap was orderedI waited until Jan 21st only because DH couln't get time off before then.

Feb 5th post op, I made the desision for hyst. But again due to DH schedule I can't have my surgery until April 1st!
I am even trying the bit about taking BCP straight through to have some sort of relief from AF until then. This is the only way I know of to some what contain it. I still have constant pain.
But I am managing it.

I'm not TTC, so my case is diferent than others.
I have finished having kids and all.

There are several treatments available for those TTC in the future.
If you need more info, let me know.

Patty

JodyGirl · 02-20-2003, 04:16 PM

Thanks, Patty Ann! Your post gave me a lot to think about - I think I will call the gyne's office tomorrow, first thing and tell them that I'm in a lot of pain. The problem with specialists here is that we currently have a doctor shortage - there are maybe half a dozen ob-gyns in the entire province. It's really horrible. The wait times are phenomenal.

I find that the Tylenol is helping - I have problems with peeing, too - it just *hurts*. A LOT.

Thanks for taking the time to respond - I really appreciate it.

shar · 02-20-2003, 04:28 PM

Hiya JodyGirl..

I too have endo.. had surgery a few years back to have much of it removed.. Luckily, since then I haven't had as many extreme "episodes" of pain as before..

I find extra strength tylenol helps for me, but when I'm in severe pain, the only thing that even comes close to helping me is Anaprox (px) .. which is actually a muscle relaxant, but it's saved me from losing my sanity to pain many a time.

Oh, and my heating pad has become my best friend..

With the pains you're having I'd be off to the doc and begging for something to help me..

Hope you are feeling better soon!

shar

JodyGirl · 02-20-2003, 04:33 PM

Thanks, Shar!

I wish I could have surgery, but my gyne says she won't touch it - my growths are on my colon, rectum and bladder! Just in the most awkward place they could possibly be. Bleccch.

I am going to try and see a doctor about this, soonest. The pain is something else. *sigh* It never rains but it pours.

indiana_troll · 02-20-2003, 06:04 PM

I had severe endometriosis. Part of my bowel was removed in order to get the endo off of it. I used a combination of vicodin and cataflam to get rid of the pain. Try using the vicodin with your celebrex if your doc will give you a script. I suffered with it for 7 yrs before finally giving in to a hysterectomy. I had 5 laps done before that. Good luck in finding some pain control. I know how you are feeling.

Patty

JodyGirl · 02-20-2003, 06:43 PM

Wow, Patty, it sounds like you've been through it...I've heard dozens of horror stories related to endo...it's a vicious disease! I'm glad you were able to find some measure of relief. Thanks for posting.

PS: Your daughter's picture is gorgeous. :-)

Pattyannruss · 02-20-2003, 09:18 PM

Sounds like you have a UTI!!(VERY common with endo!)

that will give you the perfect reason to get in earlier!

Call your GP and tell them you need to be tested for a urinary track infection. They can slip you in and out with very little trouble.

Your chance to get some alt pain med help.
And a follow up appt.

Good luck!

Patty

Liznz · 02-21-2003, 02:07 AM

Hey, I have endo as well!!! (Just another thing to add to PCOS as if it weren't crap enough already!!!)

I had a lap done about 1 1/2 yrs ago...and have found it to be really good since then (ok....so for me really good is what most people would term agony)

I also have Irritable bladder....which they found when I had my lap done!!

I'm hoping that with diet and exercise I might be able to at least (hopefully fingers crossed) keep the endo in check.......heres to hoping huh!!!

I feel for you guys going through the pain...I have to admit that before I came to this site...I had no idea and felt so alone...I felt like a freak!!! (Thanks to my loverly doc who recommended this site to me and ALL her patients!!! and........I'm down in NZ!!! So nice to know there is something out there for us...and that we aren't alone and that we AREN"T!!!! freaks!!

I wish you all luck, I hope that you find something to ease the pain, and to help with symptoms

love and hugs

Liz

princess5 · 02-21-2003, 09:51 AM

I have endometriosis too and it's no fun as you know!

I am also in the process of trying to get my gyno to do something better than putting me on the pill and giving me narcotics!

I get extreme pain in my left ovary and pain for 5 days or more with my period.

One thing that is worth trying is acupuncture. I have just started having it and also have been put on a prescription of chinese herbs and my acupuncturist is really positive that it will relieve my symptoms in time. Apparently endometriosis/pcos etc is caused by what the chinese call a damp congestion.

It's worth a try anyway!

princess5 · 02-21-2003, 09:53 AM

Oh - and another thing with acupuncture. It can bring relief to pain. Call up any acupuncturist when you are in pain and they will try and fit you in that day to help.

JodyGirl · 02-21-2003, 09:58 AM

Girl, you must have read my mind! :-) I have used acupuncture in the past for sinus problems and it is incredibly useful - I also had it for a stressed achilles tendon, a few years ago. I must say, I was very satisfied with the results. Hmmm...maybe it's time to give my acupuncture doctor a call!

Thanks! :-)

princess5 · 02-21-2003, 10:01 AM

yes - definitely give your acupuncturist a call. They seem so much better at being able to tell you what the problem is and find a solution instead of you having to tell gyno, GP etc what is wrong and push for any sort of treatment! I hope it helps you.

Please feel free to Pm me or e-mail me if you need any help or support.

that goes for all Cysters with endo - maybe we can help each other.

SouthernGirl · 02-21-2003, 10:26 AM

Another endo sufferer here. My problems began about 15 years ago, shortly after the birth of my son. I know the pain...man, do I know that pain. It would shoot down my legs and into my knees. I can remember hitting myself in the knee and thigh area in an unsuccessful attempt to divert the pain. I couldn't leave my house for the first 3 days of my cycle. The PMS was unbearable...I maybe had one good week a month. And they wonder why we get "b%*#$y". After having a lap/laser surgery, it was determined that I also has ando (the endo tissue was in the muscles). The age of 35 I was a prime candidate for a hysterectomy....I said no. I still wanted to have another child. I had 2 rounds of hormone therapy with a drug called Synaril (not cheap). I basically went into menopause....attempting to kill the endo tissue. I was doing better up until a few years ago. I was really wishing I had had the hysterectomy. I went on BCP for a year....but that caused another set of problems. I have been off of them for just over a year.

Today...I can't even tell when I am FTS. My cycles are "normal". I attribute this to the Glucophage (for IR) I have been on for the past year and a very serious destressing of my life. At the age of 42, I have decided that my baby making days are over.....my health is my prime concern.

As for pain medication...the Anaprox (as previously suggested) was first recommended to me, but it upset my stomach too much. I believe its the same ingredient as Aleve. I next switched to Motrin. Doc told that it worked better for muscular pain than Tylenol. Even the Motrin worked better than Advil..and they are both Ibuprofin....I hate to say it but it was nothing for me to swallow 4 of those pills (800 mg) at once. (My friend takes 800 mg prescription ibuprofin for her arthritic shoulder).

I wish you luck and I hope you are able to get some relief soon. No one should have to suffer....I also found that soft relaxing music in a dark comfortable room (my bed) also helped to "distract" my mind from the pain.

JodyGirl · 02-21-2003, 10:35 AM

Wow, SouthernGirl, it sounds like you've really been through it! I was explaining to dh last night, some of the symptoms and related problems women can and do get with endo, and he was amazed. It's a very pervasive disease. And once you have it, it's like it invades your body, going wherever it wants to.

Music is wonderful therapy - what I've been doing in recent months is self-hypnosis - I started it initially for my RA, and I find it gives me a feeling of control over my symptoms. Maybe I need to start using it for the endo as well.

It's very interesting, but many women I've spoken to who have PCOS were initially diagnosed with endo, and the PCOS diagnosis came after. It kind of makes you wonder if there's a chicken-and-egg situation going on, since both disorders have an autoimmune component. I've also heard that the bleach that is used to whiten tampons and sanitary napkins has been suspected as a contributing factor.

I can't take Anaprox, either - it tears up my stomach too badly. Since I'm on Celebrex for RA, the only OTC I can take is Tylenol, but it really does help me a lot. The only down side is that it makes me sleepy - but then again, that could be a blessing in disguise, since rest is probably what I need during a flareup!

Thanks for posting. :-)

Hugs,
JoAnne