Endometriosis & MS

[funkybeachhouse]

Hi everyone!

I'm new here, a 41 year-old female dx'd w/ RRMS in 2006 that is progressing into SPMS.

(Warning this might be a little gross for people with queasy stomachs )

In 2011 I was having a lot of trouble with my MS: (or so I thought) nerve pain shooting up and down my legs, shooting rectal pain, stomach cramping and constant diarrhea, stomach bloating, trouble urinating, not eating but gaining weight, etc. I spent most of the summer curled up in a ball in bed.

Finally the pain got so bad I went to the ER thinking it was an exacerbation & possibly a kidney stone. They ran a battery of tests and found three large masses: two ovarian cysts about the size of a grapefruit, and a giant fibroid tumor in my uterus. The OBGYN and I decided that if the cysts didn't resolve (burst) over the weekend, she would try to remove the cysts surgically the next week.

The pain only got worse, so we scheduled the surgery. I had a feeling something might be seriously wrong, so I gave her permission to remove anything she saw that was bad. She said she didn't anticipate anything like that, but six hours later I woke up to find out that I had a total abdominal hysterectomy (removal of uterus & cervix) & oophorectomy (removal of left ovary & fallopian tubes). Apparently when the surgeon went in, she found quite a mess- everything was stuck together. My left ovary was completely encapsulated by my uterus, which was also twisted & covered in adhesions & endometriosis. Another surgeon was called in because my intestines, ureters, and appendix were also stuck to my uterus/ovaries. Diagnosis: Stage IV Endometriosis

The recovery was horrible with a lot of complications. It threw my MS into a tailspin, I wound up with an infected blood clot, caught the flu & dropped about 30 pounds, and in the end went in for another operation to remove my remaining ovary & fallopian tube due to the return of endometriosis w/ a side of about 20 new ovarian cysts.

And then a whole can of worms was opened by going into sudden surgical menopause: inflamed joints, trigger finger, jaw issues, hot & cold flashes, MS flare-ups, the list goes on.....

Anyway, I did a lot of research & found many women with MS (as well as many other autoimmune diseases like rheumatoid arthritis, lupus, etc...) who also wound up with severe Endometriosis, ovarian cysts, and fibroid tumors. I guess I'm just wondering if anyone on this forum thinks there is a correlation between autoimmune disease & Endo. I'd love to hear about any experiences if anyone is willing to share.

Sorry this is so long, and thank you for taking the time to read my post.

[MSer102]

The ladies I know who have endometriosis or fibroids don't have MS or any other autoimmune disease. I'm not sure how a disease of the central nervous system would cause endometrium to get outside the uterus.

On the other hand I can see how endometriosis could be the trigger for an autoimmune disease if the immune system starts attacking the endometrial cells outside the uterus as foreign invaders. The tendency to have an autoimmune disease is genetic so people who have an autoimmune disease sometimes have more than one because that's how their genes are programmed. So it makes sense to me that a person could have endometriosis as one autoimmune condition and MS or lupus or arthritis as another one. Not that one causes the other but that some bigger thing like genetics is like the parent of both of them.

[SNOOPY]

I'm just wondering if anyone on this forum thinks there is a correlation between autoimmune disease & Endo.

MS and endo would be separate issues

The only correlation between MS and endo would be the majority diagnosed with MS are women, men are in the minority.

Endo is not uncommon in women with or without other health issues. Having MS does not protect us from having other health issues.

I am sorry for all that you have gone through --- how every difficult. I hope you feel better soon

[MSer102]

I'm just wondering if anyone on this forum thinks there is a correlation between autoimmune disease & Endo.

I looked up some stuff online and it looks like we read some of the same things. I don't think its so important if anyone on this forum thinks there's a correlation between autoimmune disease and endo but that a lot of researchers think there is which is important. But that's for endo. I don't know about fibroids and cysts.

[Justsayyes]

I had a surgery (myomectomy) at age 30 for large fibroids, and severe endo was discovered and lasered out at that time. Had more lasered out a few years later along with removal of a chocolate cyst on one ovary.

My mother also had large fibroids and suffered for years. She probably had endo too.

18 years later diagnosied with MS. I see the studies noting a correlation, doesn't seem to be a really strong one though. For me, the endo was long before the MS.

A good friend ended up with a hysterectomy, and there was quite a mess of endo found, her one falopian tube/ovary was adhered to her hip. She has a history of asthma and some serious allergies.

Just putting my info out there for you since you asked!

[CaroleL]

I had a hysterectomy at age 26 because of severe endometriosis.

I'm in limbo for MS but when I look back, I started having MS symptoms at about age 30.

[fishead]

I had hyster at 45 for endo. I don't believe the correlation, but who KNOWS??

[ladibabe]

Interesting

I don't have endo but do have MS. I hope there is not correlation.

[Karenkay]

Auto-immune seems to run rampant in my family. I have MS but not endo... my youngest sister has endo... but not MS. My daughter has thyroid problems ... I don't think one disese has any more to do with the other. Genetics (and other factors) playing around with us.

[Myoak]

May I quote a young Irish fertility doctor speaking on topics in this thread, Dr. Phil Boyle and furnish links to him addressing these issues?

Quote, “50% of women with polycystic ovaries also have endometriosis. Substantial evidence indicates that endometriosis shares many similarities with autoimmune diseases.”

Dr. Boyle states he puts “all patients with persistent PMS, personal or family history of autoimmune disorder, and endometriosis on low-dose naltrexone.”

The first video is 5min: http://www.youtube.com/watch?v=IdDq9NcF7Tk

The second video is 9+ min and he mentions polycystic ovaries about 7.5 min mark. Both videos are relevant to MSers.
http://www.youtube.com/watch?v=zS8RdcvPMJY

Unfortunately, your doctor probably has never heard of low dose naltrexone (LDN) and will be ignorantly dismissive, saying "we don't know much about it". It is prescribed off-label and 10’s of thousands of patients are using it for a variety of illnesses. The reason LDN is effective for many people is that LDN improves immune system function. It is very inexpensive and has an outstanding safety profile.

There are online links to NIH studies for anyone interested in LDN research for various diseases; Google your inquiry. In any case, your doctor will not know about nor be interested in prescribing LDN so you will have to gather info yourself, if you are interested. You can get research info from me, if you need to, and if I discover how and where to provide an email link. Good Luck!

[SNOOPY]

The second video is 9+ min and he mentions polycystic ovaries about 7.5 min mark. Both videos are relevant to MSers

I didn't see the relevence to PCOS and MS

PCOS is caused by a hormonal imbalance and is one of the most commons causes of infertility. MS does not cause hormone imbalances and does not affect fertility. PCOS symptoms start in the teen years.

Endometriosis is different than PCOS and I am not aware of PCOS causing Endomertiosis.

Although I am more than willing to believe there is a benefit in taking LDN for some with MS I don't see or believe LDN will help with infertility (PCOS) or Endometriosis.

[Myoak]

“I didn't see the relevence to PCOS and MS”

You didn’t see the relevance of Dr. Boyle’s presentation even though he is a fertility doctor talking about PCOS, MS, and endometriosis during his speech?


“I am not aware of PCOS causing Endomertiosis.”

Dr. Boyle said, “50% of women with polycystic ovaries also have endometriosis” you should be aware he didn’t say PCOS caused it.



“I don't see or believe LDN will help with infertility (PCOS) or Endometriosis.”

You may not believe LDN helps with infertility or endometriosis, but obviously Boyle does. Why? Because of the clinical results he has seen involving hundreds of patients. You have watched both videos and you think he is mistaken based on what? Facts of clinical experience do not change just because someone doesn’t believe those facts. Truth is not an enemy, don’t treat it like one.



“MS does not cause hormone imbalances and does not affect fertility.”

MS CAUSING hormonal imbalance was not stated in the video at all.
However, many people have wondered if there is a hormone component to MS based on the fact that more women get MS than men. There is a great research article titled: Estrogen and Testosterone Therapies in Multiple Sclerosis
http://www.ncbi.nlm.nih.gov/pmc/arti...9/?tool=pubmed

It suggests there could be a relationship between hormone imbalance and MS. Quote…
“A large body of evidence supports the therapeutic potential of testosterone and estrogens in animal models of multiple sclerosis. Mechanisms of action include both immunomodulatory and neuroprotective pathways thus suggesting that sex hormones represent novel treatment options that could beneficially affect the inflammatory as well as the neurodegenerative component of the disease.”

We are all working toward the goal of good health. Hopefully, friendships are made along the way but I don’t think we can sacrifice accuracy in that pursuit. Our health and the health of our loved ones are just too important.

All truth asks for is a fair hearing. Let’s make sure we listen carefully and clearly hear what is being said by doctors willing to share their clinical experience for our benefit.

Good health and improvement techniques need to be presented and made widely available. No one should be denied the opportunity to consider them. That is what motivated Dr. Boyle to speak and it is what motivated me to post what I saw as appropriate. It is also what motivated someone to establish this website.

We may disagree. God bless you anyway, there are sure to be other things we do agree on. I wish nothing but the best of health and good will to those who visit here. Truly.

[SNOOPY]

Myoak,

I have a personal experience with PCOS. I have PCOS. I had symptoms of PCOS in my very early teens.

PCOS is caused by an overproduction of Androgens (Testosterone). In women with PCOS, the hormones are out of balance: these women have higher-than-normal levels of androgens and may have lower-than-normal levels of estrogen.

Truth is not an enemy, don’t treat it like one.

One person's truth can be untrue for another based on personal experience.

BTW, I have never, as of today, had Endometriosis. I am 51 years old and a ultrasound still shows PCOS.

[Jrasted79]

These sound like some of the things I have been suffering but didn't give much thought to because my other symptoms were more bothersome, except the trouble with urination.

It got so bad and I was afraid of getting kidney stones so I went to my doc, my issue seems to be nocturia, whereas my urination problems are only at night. Well my doc thought it was a UTI ( I knew it wasn't but he wouldn't listen) he ordered a test for UTI of course it came back negative.

I then called to schedule another appointment so we could get to the bottom of it. This is what I was told, well he tested you for UTI and the results were negative so medi-cal will not approve another visit for the same problem.

What the.... I was infuriated!! Because his first thought was proven to be ok I can't go back to find out what the problem is. It's so ridiculous.

Anyways, I have very painful menses and they always say I don't have yeast infections but if it walks like a duck and quacks like a duck LOL I know my body better than anyone else and i'm telling its all jacked up LOL

I see my lady doc on Wednesday so hopefully she will help. She is new to me and we have only met once before and had an hour long intelligent conversation so I think she will take what I have to say seriously for once. I'll post any pertinent info should I receive any.

[Fed Up]

Jrasta,

You have urinary tract "yeast infections" or vaginal infections?

I have known women in their 30's getting complete hysterectomies for this, what a true blessing! No one should suffer more than one day, with that disabling pain.