Endometriosis ?

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Regular Member

Date Joined May 2008
Total Posts : 57
   Posted 8/6/2008 7:27 PM (GMT -6)   
Does anyone here have that? I am going to a gynotologist on Monday to check if I have this. I always have horrible cramps.. and I know it is normal to have cramps but mine are so bad that I end up shaking and get so fatigued that Im unable to walk or even talk. Im hoping if I do have that I can get it under control and it will help with my lupus. Which I have heard that Endometriosis can set off Lupus.
Medications: Prednisone 7.5mg. Plaquenil 300mg. Methotrexate. Naproxen (for pain). Multivitamin. Calcium. Fish Oil. Vitamin D.
15 years old. Lupus, Raynauds, and Hashimotos.

Veteran Member

Date Joined Oct 2004
Total Posts : 2244
   Posted 8/6/2008 8:17 PM (GMT -6)   
(((( bigsanfer )))) I don't have it but I wanted you to know you will be in my thoughts and prayers. Please let us know how the appt goes. Take care

Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Davocet (as needed) and magic mouthwash (for mouth sores)

Veteran Member

Date Joined Feb 2003
Total Posts : 5514
   Posted 8/6/2008 8:56 PM (GMT -6)   
Hi there,
I don't have endometriosis either, but I do get those unbelievable cramps that are so bad you almost pass out. I'm out of commission for 3 or 4 days with them.  It's hideous.  I'm actually getting scheduled (sometime this week) for a hysterectomy.  It'll happen this fall.  I can't live with this pain and disruption any longer.  It seems to get worse each month..... I understand what you're going through.  Being a woman sucks. LOL.
Our hormones play a huge roll in our lupus. Maybe find out at the same time if you have a hormone imbalance. Simple blood tests. Sometimes if those are evened out things improve. 
It's interesting.  My cramps started getting really bad like that when I was about your age as well.  Then they got better in my mid 20's, now in my mid 30's they're a nightmare again.  It's like my period has gone back to when I was a teenager!  It's WEIRD!!! confused
I hope you get answers quickly.  living with cramps like that month to month is no way to live.  Especially when you have school to attend.  It's so hard.
Good luck!
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus

Regular Member

Date Joined Mar 2008
Total Posts : 110
   Posted 8/6/2008 10:02 PM (GMT -6)   
I have/had it. I had a total hysterectomy six years ago, but I still have residual endometrial tissue that causes me problems sometimes. My gyno told me that this would happen, and it hasn't been too bad; much more bearable than what I was going through before.

dix: lupus sle Jan. '99, hypo-thyroid Mar. '06
rx: pred. 5mg/day, plaquenil 200mg/day, levothyroxine .112mg/day, premarin .45mg/day, methotrexate 7.5mg/week, folic acid 1mg/day
Also a wife and mother of three.

Regular Member

Date Joined Oct 2005
Total Posts : 251
   Posted 8/7/2008 10:02 AM (GMT -6)   

I have it.  It started the year before my other autoimmune problems cropped up.  My GYN has since told me that studies are out now proving that endo is autoimmune, and actually was my first autoimmune disease.

The cramping you describe could be endo, ovarian cysts or fibroids.  It's hard to tell with just that symptom.  I had that as well as nonstop AF for over 3 months and severe pain with bowel movements.  I was also so bloated that I looked pregnant.  After several tests and u/s, my doc and I decided to do the laprascopy and immediately after I felt better.  I've been on birth control pills ever since to reduce the chances of it coming back.

Hopefully they can get to the bottom of it quickly for you. 

SLE diagnosis 10/05 now changed to RA 3/06, Endometriosis 5/05, PCOS 1990
Meds: Metformin ER 1500mg (PCOS); Loestrin BCPs (Endo); Methotrexate 15mg (RA); Metanx 5mg (RA); Orencia 750mgs (RA); Lunesta 2mg (as needed); Prevacid

Veteran Member

Date Joined Dec 2005
Total Posts : 1950
   Posted 8/7/2008 2:39 PM (GMT -6)   
I have had endometriosis,some of the most severe my docs had ever seen. It also invaded my insides and I probably have more residual tissue, though much was removed in the two laparoscopies following the hysterectomy. With endometriosis, I also developed polycystic ovary and both conditions are very painful. I also have irritable bowel, so all three would flare up at once and things would be terrible. It's important to get this stuff under control because it can get worse and worse. I recently had a common pelvic infection get out of control and I could hardly walk just from that. Since our immune systems are compromised, we just don't seem to fight this stuff well, and there is some documentation that certain infections, in my case TB, cause endometriosis, which is an autoimmune response, but underneath, there may be a cause that is infection related and needs to be treated because it will just get worse. A lot of research now is looking past autoimmunity for underlying causes, sometimes they are unresolved and resistant low grade infections we are constantly fighting. I think there will be real progress on this front.

I hope they figure it out. During the worst months on interferon, I would hemmorhage, but most people don't have it that bad. They would have done an emergency hystero, but my liver was so bad they could not give me anaesthesia. I was on a morphine like nasal spray for pain and totally sedated! PCOS developed soon after the first severe appearance of endometriosis, then eventually bad pap smears, so the whole mess got taken out when my liver got better and I got off interferon and I use a estragen patch and feel much better.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn

Regular Member

Date Joined Aug 2008
Total Posts : 431
   Posted 8/7/2008 6:12 PM (GMT -6)   

I am new to the list.  I am very thankful to all of you for the courage you have in voicing to all of us, the symptoms that you have.

I was diagnosed with Lupus in 1998, and my doctor died later, and the new doctor did not believe i had lupus, because the blood tests revealed only a mild case of lupus was possible.   Went into a major flare a few months ago, and asked my doctor for plaquinil.  He prescribed it, but also ordered Lupus blood tests.  these tests were very very positive  and I was sent to a rheumatologist.  the Rheumy as you call them ordere other tests done because of symptoms.  He found that I had Sjogren's Syndrome, and I had no idea what it was.  He said it was a variation of Lupus.

So I started looking on the internet and found this forum, which I feel is lucky for me.  So many of you reflect my symptoms back to me, and it comforting that I am not alone.  Many others out there who go through the same thing that I am facing on a daily basis.  I am taking 400 mg of plaquinil now, and hope that it will help.  I also have my own little drug store in my kitchen cabinet.  Host of things I am being treated for.  Most recently a heart attack.

Thank you, all of yoiu again for your listing of things.  It really helps.



Veteran Member

Date Joined Dec 2006
Total Posts : 2818
   Posted 8/11/2008 11:18 AM (GMT -6)   
Hi hun, Good luck with your doctors appt today. Please let us know how it goes. I had endo. when I was 26. I had already had a child and the doctor said I should have a hyster. It's a good thing I did because the biopsy showed I had cancer in my cervic.
I got a second opion before I did anything though. Hang in there. Hopfully they can get a handle on this and it will help with your Lupus.
God Bless
Possible sclero.  stage 4 COPD w/CHF,   Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!

Regular Member

Date Joined Aug 2008
Total Posts : 431
   Posted 8/11/2008 11:57 AM (GMT -6)   
God Bless
Possible sclero.  stage 4 COPD w/CHF,   Osteoporosis,osteoarthritis
Prednisone,Brovana, Pulmacort,zythromyacin,vicodin 4x5mg,Evista60mg, Effexor 150mg,Xanax 1.0 x3,Singular,nitro spray, aciphex,lasix,inderal,pot.chlor.,B12 
I will never leave you nor forsake you!
Does lupus cause these other illnesses in us?  your list of diagnoses and meds are also very similar to my own.  I have a hard time keeping up with all the meds, and when to take them.
and for the person going to the doctor today, I will send prayers your way asking for the best possible outcome to be discovered for you, and if necessary maybe a procedure that will lessen your pain.

Veteran Member

Date Joined Dec 2004
Total Posts : 8198
   Posted 8/12/2008 10:17 PM (GMT -6)   
  I had Endometriosis inside my uterus after having my second child. With me it felt like my insides were going to fall out when I stood up, very light periods and constant low back pain. After 3 years and opinions from 3 doctors I decided to have a hysterectomy which made things so much better.
  I wish you the best with this and get as many opinions as you need to feel comfortable with your decision. Take care and keep us updated. You will be in my thoughts and prayers.
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.

New Member

Date Joined Jun 2008
Total Posts : 14
   Posted 8/14/2008 8:10 AM (GMT -6)   

Hi there,

    I do have endometrosis as well as Lupus, Fibromyalgia, Sjogrens, along with a few more things. I've been on continuous hormones since May 2000 (No periods since) and it has helped tremendously. You just have to find the right one for your body and make sure your Rhuemy knows as well. Good luck!!!!

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