[envy]

Hi all,

I haven't been here in awhile since I've just gotten married and all the planning involved in that :wink2:. I just had a quick question about how many of you have had endometriosis along with an autoimmune problem (lupus or thyroid, vitiligo, etc.)?

I've been having really bad cramping and stabbing pains in the lower abdomen for the past few months and went to see the gyno this Monday, where he found a tender spot on the exam and did an internal ultrasound. On it he pointed out my left ovary, which looked fine, but when he went looking for the right one, he couldn't see it clearly and he looked kinda concerned, but didn't mention it. He took bloods to check my thyroid (I have Hashimoto's antibodies, but so far no thyroid involvement as of 3 years ago) and did a CA-125 (which I know is for ovarian cancer, but will also be positive for endometriosis?). Right now I'm waiting for the results of that and the Pap test to come back. He just prescribed a really high dose of Motrin and said he didn't want to put me on birth control pills since that seemed to make my symptoms of the maybe lupus/CTD I have flare up.

I also noticed in the past few months that these symptoms got drastically worse before my monthly...does this happen to anyone else? I scared my poor husband this past week, so I can only assume I must've looked like walking death since he looked ready to take me to the hospital. I was just in a lot of pain, shaky, sweaty, paler than normal.

Any info or experiences you've had would really be helpful.

Thanks,
Envy :worried:

 

[KarolH]

Hi there,

I dealt with Endometriosis for years until the age of 36 when they finally did a total hysterectomy on me.

Sorry your having issues. It is very painful so my heart goes out to you.

I have Lupus, APS and Fibro which I never really throw out on this board.

The Fibro dx I got years ago. I got a dx of MS in 2005 which they have now discovered is Lupus, not MS.

I took needles everyday. The drug was Lupron and it helped me a lot.

Hope you get it under control.:wink2:

 

[Maia]

The only way to dx endometriosis is through surgery/laproscopy. So that may be the next step for you depending on what exactly was seen on that ultrasound and the bloodwork if they are suspecting endometriosis.

I was diagnosed with endometriosis before lupus, and also had the Lupron shots. Lupron shots have been associated with a lupus like syndrome, although they will not go so far as to say it causes lupus.

My lupus symptoms often get worse before the monthly visitor... and my pelvic pain would get worse before the period as well as the first few days of it (then it was terrible). My pelvic pain is now much improved since surgery to cut a nerve as well as fix my severely retroflexed uterus.

Good luck to you - please post with an update when you can! Take care...

 

[envy]

Thanks guys. The doc said that if the symptoms got worse that a laparoscopy would be the next course of action and that they could use a laser to remove the lesions. I'm guessing that there must be growths covering the right ovary, otherwise it would've been seen on the ultrasound. What I don't get is how they can tell endometriosis from cancer if the CA-125 is elevated (I don't have the test results back yet, so I don't know if mine is elevated or not) and you can't diagnose endometriosis until the laparoscopy is done. He just thinks I have endometriosis right now.

 

[star70]

Hi

I have severe Endometriosis along with cysts, fibroids and extensive severe adhesions. My consultant said he suspected Endometriosis from the start and the laparoscopy just confirmed it. I was diagnosed after 11 years of being told I have IBS! I had trouble with the contraceptive pill used as an attempted treatment as it made me very ill. I also had a violent reaction to zoladex and ended up in hospital after my first injection. I have a boarder-line under-active thyroid which my doctor is hesitant to treat for some reason. Along with this I have a variety of other lovely problems.

I have not had a diagnosis for Lupus as of yet. I suffer from many symptoms one being a very severe rash which affects my face and neck.

Hope you get a definitive diagnosis soon!

Regards

Star

 

[KarolH]

Envy,

I had 17 laporoscopies before the total hysterectomy.

They would just keep going in and cleaning me out, this averaged 2 times a year.

It was a never ending battle for me.

I sure hope you fair better.:wink2::wink2::wink2:

 

[KarolH]

Lupron shots have been associated with a lupus like syndrome, although they will not go so far as to say it causes lupus.

Very Interesting Maja.

I did not know that.

Now ya got me thinking.:hehe:

 

[envy]

Oh, Karol-17 laparoscopies?! That was just plain mean what they did to you. How long did it take you to recover from them? Did that even help with your symptoms?

 

[KarolH]

Oh, Karol-17 laparoscopies?! That was just plain mean what they did to you. How long did it take you to recover from them? Did that even help with your symptoms?

Understand that my problems started at the ripe age of 9 and continued strong into my adult life. The gyno, thank god, did laparoscopies instead of a hysterectomy which allowed me to have my son 17 years ago.

He would just keep going in and cleaning me out.

It would attack everything and I would have blood cysts that attached themselves to my bowel wall, bladder, colon, you name it and it attacked it.

I am glad now to be done with the period and never have to suffer the big "E" attack again.

My heart goes out to you.

 

[bluedolphin]

Hi,
I had a laproscopy done for endo and I have lupus. I had the lapro surgery done in March and have felt better until here recently. Some of the pain in my lower abdomen has come back now. I take the Depo shot and dont have the monthly visitor been when it is time for my shot, I have really bad symptoms and the pain gets worse. My next step is a hysterectomy if the pain continues.

Hopefully you will have good results from the lapro surgery. All i can say is that I am glad that I have had these few months of relief from that pain, now if all the rest would go away.

I wish you the best!

 

[LadyLily]

Very interesting - I hadn't thought that there could be any connection . . . perhaps there isn't but there seems to be a fair few people who appear to have both. I have endo which was diagnosed 4 years ago when I had my appendix removed. I'd been getting monthly pain which varies in severity - sometimes it makes me almost pass out and vomit but usually it's copable . . . however unlike most people, it's mid-cycle rather than at period time. I had another scan back in July this year to rule out anything more sinister and since nothing showed and blood tests were OK (as far as things gynae are concerned anyway!) - the doc has just assumed it must be either endo or adhesions.

I have to admit to being nervous of embarking on any hormone treatments - prescription strength cocodamol works for now when necessary.

I hope you manage to find a solution for you.

Best wishes,

Lily

 

[envy]

Thank you all for sharing your stories with me. I just got the results of the blood work back and he said that everything was normal, so I don't have ovarian cancer and my thyroid is still functioning on its own even with the Hashimoto's. He went over my chart as he was giving me the results and said that he still thinks it is endometriosis and that if the pain gets worse that he'll do the laparoscopy. I see him again in November, so I just have to wait and see for now.

I just hope that the extra-strength Motrin he prescribed will do something with the pain as long as I start taking it a few days before I start. Even now I still get cramps and twinges when I'm not on my monthly.

In other news...I just got an appointment with a lupus specialist in DC for Sept 2. She does lupus research at the teaching hospital, so hopefully I can get a diagnosis soon as I imagine she's gotta be up to date on symptoms and should know how to listen to a patient (fingers crossed ). Here's hoping!

Take care!
-Envy

 

[KarolH]

I just got an appointment with a lupus specialist in DC for Sept 2. She does lupus research at the teaching hospital,

Envy,

Is this Washington DC??? If so, would you pass along her name. I am only 2 hours from there.
I wish you luck and keep us posted.:wink2:

 

[envy]

The rheumatologist's name is Dr. Virginia Steen. She works out of Georgetown University Medical Center
3800 Reservoir Rd., NW
Washington DC
phone number for inpatient/outpatient info: (202)687-8233

You have to fax your records to their office and she'll review them (takes 2-3 days) and they'll give you a call back to set up an appointment. Hope this helps! I'll let you know what I think after seeing her.

 

[KarolH]

Are you flying here or driving from Illinois?

Gosh so far to come.

What made you decide to come all the way down here?

How long will you be in the area? Traveling alone?

I hope you will have someone with you.:wink2:

 

[KarolH]

I have to say that the Hysterectomy was THE BEST THING THAT EVER HAPPENED TO ME.

No more female issues for the rest of my life............and that works fine!:wink2:

 

[envy]

Actually, I need to update my info. I'm living in Waldorf, Maryland now (it's an hour south of DC). I'm not sure if I'm going to drive or see if there's a metro station nearby--I hate the way people drive here...the turn signal is apparently a sign of weakness or something and they have no concept of stopping distance, hence so many accidents on the beltway [cringe]. I think I might see if I can rope my hubby into coming along .

 

[Pickles]

Endometriosis

HI

I'm Pickles from Georgia, long time since I've posted. I had endometriosis, fibroid tumors and ovarian cysts when I was 39. I had severe, doubling over pain. Gyn did a laparoscopy and put me on Synarel which is a nose spray that puts you in temporary menopause hoping the endo doesn't come back..... Well it did; worse than ever. I was in so much pain, I begged him for a hysterectomy. I could only take the Synarel for 6 months. I had the lapo in July of 1989. In July of 1990, I had a complete hysterectomy. He thought about saving one of the ovaries but he got in there and decided it would probably have to come out later so he took both of them out at same time. In July of 1991, I had gallbladder taken out cause of gallstones. I asked him to take out appendix too cause I thought it would be next one to cause problems but it was too high up. In December of 1992, I had a bad car wreck and hurt my back. The following year I had a nervous breakdown probably from all the surgeries and no rest in between. I was working then and had absolutely no help at work. When I had the hysterectomy, I stayed in hospital for 5 days cause I couldn't quit going to the bathroom so they kept me. It was like a little vacation for me.

I never could get pregnant so why put up with the "curse" every month??
I was so glad to get all that over with. I think now they can do so much
more if you have endometriosis instead of a complete hysterectomy. I wasn't diagnosed with Lupus until 1999, first it was RA then lupus then everything else....Hypothyroidism, Raynauds, Fibromyalgia, Scleroderma, Sjogrens,Depression, IBS, Peripheral Neuropathy, Peripheral Arterial Disease(PAD), Kidney Disease and Osteopenia.

I retired from work in 2001. My rheumy wanted me to quit before thenn but couldn't afford to. My husband doesn't work. He has paranoid schizophrenia so I was the only one working. I finally got approved for disability in 2003.

I wish you the best of luck and hope everything goes better for you.

 

[cispence98]

I finally go to the gyn next week for a long over due visit!! (2+ yrs ago) I have had cervical displasia and had a biopsy proving precansercous so they did a freeze and that didn't work then I had the LEEP procedure done. At my last appt with her she told me my left ovary was swollen but didn't seem too concerned I have always had terrible cramping and its worse before period but actually it stays around pretty much all the time, it hasn't been as bad since being put on prednisone, I made the appt because obviously I need a pap done bad (ins doesn't pay for womans visit thats the only reason I hadn't seen her sooner) anyway my sister just had a hysterectomy done for cysts and other things that caused the desicion, my question is do you also get bad lower back pain with endometriosis? Since before my last period I have had severe lower back pain, the same spot as period cramps but on the back side, so I had a double wammy, does anyone else get the lower back pain, its kind of what forced me to see her, I am doing process of elimination before going to neurologists for testing!!

 

[laura87]

hi there.

I was diagnosed with sle twelve months ago and the doctors also think i have edometriosis. I have had 2 internal examinations and other things which showed nothing. I am now awaiting a laparoscopy as they think i have endometriosis.

When i went to my lupus clinic last week i asked my consultant if lupus and endometriosis were linked and she said that they were not. However, i have read that it is definitly linked to auto-immune diseases!?

i just got engaged and i really dont know how much more our relatonship can take im telling you. I

I hope you start feeling better soon! Your not on your own!

Laura x