Who of us here has endometriosis too?

princess5 · 04-30-2003, 07:31 PM

I was just wondering how many of us suffer with endometriosis too and whether it would be helpful for us to know who the others are so we can help/listen to each other?

ellialex · 04-30-2003, 09:07 PM

I have stage one endo. I had a LAP last month and was Dx. Unfortunately, I dont know much about it...

Pattyannruss · 05-01-2003, 12:51 AM

I (HAD) stage 4 endo and Adenomyosis(This is the form that takes over the uteris).
Along with extensive scar tissue build up.
The endo totally distroyed my rt tube and part of the ovary.

Pathology came back pre cancer cells for the uteris, so had I not had the surgery now, within a few years I could have developed the cancer.
I also have bladder issues due to all the infections.

I had my surgery on March 18 2003.
Full hysterectomy.

I am still dealing with a UTI(6 weeks now) They will culture it and get back to me.
Lord I feel 200% better!!

Patty

princess5 · 05-01-2003, 09:51 AM

I was diagnosed last year after a laparoscopy. I don't think we use the terminology in England like you do regarding the severity of the endo - but i know that mine is on the Pouch of Douglas and on the left ovary, womb wall and fallopian tube. Mind you that was a year ago and i have been suffering badly with it so it could have got worse.

Next monday i am having laser surgery to try and get rid of some of it and hopefully it will relieve some symptoms.

My symptoms are:

Excruciating periods (the blood is not even red. just black gunge mostly)
Chronic fatigue
Pain on left ovary
Cramps pretty much every day
Frequent urination
Painful sex

And that's not including the PCOS ones!!

It would be good to be able to speak to each other when we have questions etc.

Pattyannruss · 05-01-2003, 05:15 PM

princess5,

I need to make something VERY clear for you.
BCP can help control endometreosis.
BUT they make Adenomyosis(severe form that attacks the uteris) WORSE!!

With both of these issues I had a conflict of interest in my body.
I was put on Yasmin to control PCOS. But unfortunatly with as bad as things were inside, it made things much worse.

The BCP did not control the PCOS. In fact the cysts did not show on US until 6 months AFTER starting the pill again.

I started having alot of pain and the over all feeling of illness.
I developed sinus infections,ear aches, hives and urinary problems. I thought it was a side effect of the pill or Gluc.
No Dr would comment or give suggestions.

What I have found out is the pill agrivated the Andeomyosis.
Most Dr's can not even DX this condition until they do pathology on you uteris(after hysterectomy).

I was lucky enough to have a Dr who is very familar with it and endometreosis. So he knew what we were dealing with.
I had been so sick and I was done having kids. Which was a good thing. Because the chances for me to have another child would have been 0 anyhow.(Thats how bad things in there was)

So my suggestion would be to research Adneomyosis and then talk to your Dr again. If it could be that, you need to be off the BCP ASAP!! That is what can be causeing your problems.
I didn't know about the BCP issue with Aden until AFTER my surgery.Make sure you take written info to the Dr or they will brush you off.

For me it didn't matter because the pathology on my uteris came back with high risk of pre cancer cells.
So it was good I took care of mine when I did.

There are other treatments available.

If you need help with the info, let me know.
I am willing to look it up again and send you the links.

So many women live with endometreosis with out ever knowing they have it. Some have pain when others don't.
I look back and realize I have had it as long as PCOS.
But it didn't start causing trouble until I hit 33 years old.

Happy Hunting,
Patty

princess5 · 05-02-2003, 05:08 AM

Thank you so much for warning me!! I will try and find out as much as possible about it and then take it to my gyno and see what he says (mind you he's pretty useless so i might just have to work it out for myself!). Do you know of any links etc to info?

It sounds like you have really suffered with endometriosis. Has the hysterectomy cured it or just improved it? I'm only 22 and havne't had kids yet and would like to one day so that's not an option right now.

indiana_troll · 05-02-2003, 09:28 AM

I too had Stage 4 Endometriosis. It was all over my uterus, tubes, ovaries, bowel. My ovaries were so swollen and hard that my doctor told me there is no way he could do a vaginal hysterectomy. The ovaries would not have fit through the hole. I had to have the abdominal hysterectomy done. I also had to have a section of my bowel removed to clear the endometriosis from there. I feel wonderful now. My periods were so horrifying. Moodswings were beyond mentioning. Now that I have been freed from the endometriosis, it's a lot easier to fight the PCOS. I agree with Pattyannruss. The bcp's made the endometriosis worse. I too took Yasmin. I also took Mircette. Neither one helped with the PCOS because they were just making the endometriosis more painful.

Patty

Petulant · 07-22-2003, 07:56 PM

Is it common to have both endometriosis and PCOS? My endo seems to think that the two are mutually exclusive (since the main symptom of endo is heavy periods). He says I do not have PCOS, but given all of the symptoms, I'm sure I do. How often do women with PCOS also have endometriosis?

BrendaSumner · 07-22-2003, 08:06 PM

I have endometriosis in both ovary "cul-de-sacs". This being where the ovary sits. I haven't felt any pain other than horrible AF pain... until I started injectibles and the swelling from all the follicles. Makes Ovulation very painful as well.

ellialex · 07-22-2003, 08:07 PM

I too have painful ovulations as well as periods. I never knew ovulating can be painful as well...

Ange75 · 07-22-2003, 11:07 PM

I have stage 3 endometriosis. Had Laproscopy in April. My symptoms are painful sex, chronic pelvic pain (not sure if that is the PCOS or endoF. I do have a regular AF though even with both. But I was wondering other than having a 28 day cycle all on my own I don't know if its normal otherwise. And I hope this doesn't seem weird but I'm curious about how others AFs are. My first day is VERY heavy and Painful. 2nd day lessens..then days 3-5 are virtually non-existent. Just a few spots - but most of the time I don't even need to use anything.

Pattyannruss · 07-22-2003, 11:54 PM

Up until 2 1/2 years ago I was very regular. But I bled very heavy and for 6-7 days. Very clotty as well. Before the endo/pcos took over I only had pain and fatigue the first day I was to start. This is how I knew exactly to the minute when I would start.

As time went on, I started having BAD mood swings about a week prior to AF. Then the cramping got worse. After awhile I started having random painful intercourse. This last year, it became painful 24/7.

I have never been able to wear tampons for one reason or another.

It also took me until I was 27 to get PG.
That being reckless with birthcontrol.

It got so bad(I still think the BCP aggrivated it)I was DX with PMDD. premenstral disforic disorder.(Bad PMS)

My Dr said it is comon for women with PCOS to develope endo.
But he said it is still unknown if PCOS caused the endo or if the endo caused the PCOS. He said it could go either way.

All of the women I have talked with that suffers with cronic pelvic pain and has had a Lap done, has been DX with endometreosis.
It trully is more common than I ever knew. I had only heard about it, but never had it explained to me until I found info online and took it to a GYN surgen.

He confirmed it with a Lap.

Patty

Vic · 07-23-2003, 04:45 PM

Hi

Since I have yet to see a consult (long story don't get me started)I don't know if what I have is endometriosis or not but I have tender ovaries, killler cramps very clotty period - one of you put black gunk - and I thought it was just me. I have the mood swing the week before and have shocking back and leg pain during my period and in particular when I do not have one for a while.

I appreciate you cannot diagonose for me but does this sound like endo - when I do get to see the Consult I want to be 'armed' with as much info as possible to make sure i get the best all round care.

Thanks very much and take care

Luv

V

BrendaSumner · 07-23-2003, 04:52 PM

Patty,

You mentioned not being able to wear tampons. OMG I thought it was just me!
I can't wear them at all or I'm in terrible pain. I always just thought I was an idiot and didn't know how to insert them properly..

suzisk8 · 07-23-2003, 04:52 PM

I had stage 2. First DX'd in Feb 00. I have had the pain since mid 98. Had the lap and I was still having a lot of pain on the left side. Well I get to the point where I couldn't even walk and another Dr. found the scar tissue that the first Dr. missed! And this was in 02. I was at the point of having a hysterectomy cuz he said that he did find some new spots. So the next time I know that I have to go in for another "cleaning," I am getting a hysterectomy. Cuz none of my insurance paid for any of these cuz it was "infertility treatment" not cuz I was in utter pain.