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How many of you had an early hysterectomy/endometriosis?
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How many of you had an early hysterectomy/endometriosis?

Over the last 2 years I have noted something very interesting. I have met quite a few women either with MS, or in limbo land who had an early hysterectomy and endometriosis.

I am wondering if there is a link.

I found some research in the USA where 100,00 women with endometriosis, 516 developed MS.
100,00 women tested who didnt have Endometriosis, only 73 women had MS.

ALSO fibroymayalgia comes up high too, Out of 100,00 women with endometriosis   5,897 got Fibromyaliga. 100,00 women who didnt have Endometriosis 3,400.

Also Lupus comes up high too. Out of 100,00 women with endometriosis,   842 develop Lupus.
100,000 women without endometriosis only 41 developed Lupus.

When you look at the percentages above they are quite high arnt they?

How many of you on here have had hysterectomy and the above illnesses?

I am going to send my findings to my neurologist just out of curiosity.

I had endometriosis and an early hysterectomy I was about 25. I have either Lupus or MS type illness.

Perhaps when we are diagnosed with endometriosis we could be charted for further problems or something could be done to change this or something???

Sorry brain isnt in gear this morning. Think i have a cold coming.
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54 Comments Post a Comment
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147426_tn?1317269232
I had endometriosis and a hysterectomy/and oophorectomy at age 41.

Because of the hormonal component, I would also want to know whether with the hysterectomy the ovaries were removed.

Dx - MS

Quix
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195469_tn?1388326488
I had a partial hysterectomy at age 27 without any endometriosis.  (Partial meaning ovaries left in)

I see that my answer doesn't really help at all, since I think your main subject is endometriosis.

Dx - MS

Heather
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551343_tn?1350880995
No if you have had endometriosis doesnt matter if you didnt have the hysterectomy.

Thanks.

Thanks Quix too.
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285045_tn?1253644928
37 years old.
"probable MS"
I have an appointment Monday for discussions
on a hystorectomy. I have had endo for years, but now large fibroids
are causing terrible symptoms.  
Hmmmmm.
Interesting!  
Cyn
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Avatar_f_tn
Hi Mrs. A!!

Wow, you've been researching, huh?  This is very interesting.

Had a partial hyst (kept ovaries), at age 35, due to endo.

Maybe we should do a poll on this?

This makes me want to ask lots of questions.

Thanks, Mrs. A

Hugs,
doni
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Avatar_f_tn
I've always wondered about this myself...anyway, I had my right ovary out in 1997 because of a dermoid cyst; a hysterectomy and left ovary out in 2003 because of endometriosis. I was 43.

My diagnosis for now is CIS, spinal lesions only.

Terry
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335728_tn?1331418012
Partial Hysterectomy at age 34...no endometriosis...ovaries still in tact.
MS Diagnosis  in 1993...Hysterectomy in 1995

Rena
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233622_tn?1279338505
I had a hysterectomy last year because of several problems that included endometriosis.  My right ovary was left because it still looked ok. I was 44 so I am not sure that would be considered all that early.

LA dx MS
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Avatar_f_tn
Female wise, I am a mess.

Dx with PCOS in the 90's.  While pg with my daughter I found out I also had fibroids.  After having my daughter I started having horrible cramping and just flat out pain before and during af.  I ended up having a lap done to remove a large cyst.  I found out after the lap that I also have endo and that it had utterly destroyed one ovary and one tube.  Lucky me.  My daughter is a miracle!
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599170_tn?1300977493
I find your resurch very interesting..everthing is connected,,by your numbers it sounds like there is a for sure link,,,I had endoemtriosis that turned into andeomyosis got a hysterectomy no ms signs other then my finger tips go numb quite often,,,,
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293157_tn?1285877039
Had a partial at age 39, endometriosis, right ovary had to be taken out 2005, just before my second bout of symptoms started again.

Wobbly
Undx
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649926_tn?1297661380
Hi Mrs. A,

I am one of your people I guess. I was diagnosed with endo at 23 and suffered and had a ton of surgery for 10 years then finally gave in and had the total hysterectomy.

I have been diagnosed with MS, RA & Sjogren's had TM and auto-immune hemolytic anemia. It's been a long road and the docs still think there is something that they are missing.

I have often wondered if there is a link with the endo and also maybe some of the meds that I took for it. Were you or anyone you have polled ever on Lupron?

This is interesting stuff. Thanks for bringing the question out.

Erin :)
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147426_tn?1317269232
I was on Lupron for a short (4 month) time before the total hysterectomy.

Mrs. A

Would you like to do a poll?
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359574_tn?1328364024
Hysterectomy due to endometriosis in uterine wall 37
Oopherectomy, endo inside ovary 41
I have transverse myelitis
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641819_tn?1240329530
Wow. This is very interesting.

I had a hysterectomy (ovaries left in) when i was 33 due to endo. I have fibro. I may have something else or just really fricken weird atypical fibro. So limboing while moving on with life basically. I'm not digging for answers - just being watched.

Already we can see there is a lot of 'us' here.

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736590_tn?1280295165
Diagnosed MS - Total hysterectomy due to fibroids 5 years prior to diagnosis.  (Also precancerous polyps found accidentally during hyster)

Any connection?  Who knows?
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429700_tn?1308011423
I think you should take a poll--this is an interesting corellation!  I was 33 when I had a complete hysterectomy.  I did have endometriosis, a prolapsed uterus, and a fibroid tumor among some of the problems.  

My gynecologist told me way back then that there was a correllation between endometriosis and autoimmune disease (I thought I had lupus back then).  Also, you're more likely to have the problem if you're fair completected.  


  
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Avatar_f_tn

I was just diagnosed with endometriosis earlier this afternoon. (I have CFS)
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279234_tn?1363108849
I had a partial hysterectomy in 2005 at the age of 31 due to a prolapsed uterus I've had all my life. When they took it out, there was evidence of endometriosis that had started to go through the uterine wall.

SIDE NOTE: I lost the left ovary last year due to a hemorrhagic cyst. I only have the right ovary.

I'm unDX
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439601_tn?1357864486
Count me too,

I was DX with Endo at 18 yrs young. Mom and sister also have/had it.
I had hysterectomy at 30 when the cyst kept coming back I surrendered to a complete oophorectomy at age 36.

I was DX with MS in March 08-neuro symptoms showing for last 5 years.Dr. says I have probably "had MS for years" to see my symptoms,MRI's and LP show I have both Brain and spinal lesions.


I just wonder if anyone else in this poll had an IUD in the 70's. I think that is also a related comparison here.

Just add me to the list ya'll.
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Avatar_f_tn
Complete hysterectomy at age 31. Endometriosis, fibromyalgia.
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Avatar_f_tn
bump.........
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692025_tn?1232221694
I had endometriosis and a hysterectomy because the endometriosis turned into grey cells, and I had to have two surgeries because of it.  My OB-GYN did not get all the endometriosis the first time around and the cells had tripled within a couple months. My doctor did a complete hysterectomy the second time around within three months of the first surgery, and, I was 29 years in age.  I was dx with MS in 07 age 39 at that time. I have a lot of anger issues with this MS. Does anybody else feel the same way?
Your findings are every interesting.
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Avatar_n_tn
I am 35...Dx with MS in 2001, but definitely have symptoms that go back to when I was 12 years old..the start of puberty... After years of heavy periods I finally couldn't put up with it anymore and went and told my dr about it.   They discovered I had endo thickening and fibroid tumors.   What is strange is when I was pregnant back in 1996 with my 2nd child, they found that the placenta was full of tumors...very unhealthy looking...but my child was 100% healthy.  

I have been on Ponstel since April...that is suppose to slow down the bleeding....but that isn't working anymore....As of today, my periods are extremely heavy (hemorrage-like).  Reminds me of my bleeding during miscarriages...

This week I went to my dr...found out my fibroids are growing and causing pain during intercourse...and we are considering a hysterectomy...oh and I am currently recovering from an MS exaserbation I had 3 weeks ago...I see a OB-GYN about my condition in a couple weeks.    Is there any info out there that indicates that hysterectomy have an adverse or positive affects of MS???    
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551343_tn?1350880995
Hi quix how do we do a poll?

Its very interesting on my other forum I have nearly 20 ladies already with Endo/MS/LUPUS/RA/FIBRO

I am frightening myself now as with this quick response already, perhaps I need to do more research and work out who to send it to. I live in the UK.

Its really looks like a link, so perhaps all the ladies with Endo could be screened for these other diseases over their life time.

I met someone yesterday who told me all her symptoms and I said DID YOU HAVE A HYSTERECTOMY AND ENDO, and she said YES. Its almost like you know they will have had that now.

YES TO POLL anyway if you can sort it out. xxx
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359574_tn?1328364024
All intriguing.  However, isn't hysterectomy/oopherectomy one of the most common procedures women have?  So wouldn't you need to find a way to look at all the gals who have had this and NOT come down with neuro diseases?  Just saying.
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599170_tn?1300977493
If she was doing a scientific thesis she would because she would need a variable,,,we are simply saying its a recent connection we have all realised how many ms patients had enodmetriosis leading to a hysterectomy it may be a bit too much to be a coincidence.
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146298_tn?1258715847
Endometriosis is currently my only diagnosis. I'm not getting a hyst tho.
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Avatar_f_tn
I had a complete  hysterectomy when I was 41 after suffering from endometriosis for 5 years.  I have been diagnosed with Myasthenia Gravis and 'Mild' MS.  I am waiting to see another neuro to get a second opinion on the MS. Has anyone else had a diagnosis of mild MS ?  I know there are different types and degrees but it sounds wrong somehow, surely I either have it or I don't?  What concerns me is if it is mild now will it get worse? and do I need medication for it?  Thats why I am seeing another neuro.  Any opinions would be welcome.

Regards
Sparra57  
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Avatar_f_tn
Something to think about.
I had my uterus removed at age 21 (1976), due to uncontrollable yeast infection, tubes were also plugged. I developed Fibro in 1999 after a Flu shot. With research I felt my Fibro had a fungal etiology. I persuaded my female PA to prescribed Nystatin 1 million units and Diflucan 200mg for 1 month. (I had been a self employedremodeling contractor but was forced to quit working due to the pain.) At about the 6 week mark I noted my pain and other Fibro symptoms were lessening. By 6 months I was once again able to work, lift 50 pounds, sleep at night.

Conventional medicine is so slow in realizing or accepting what all yeast/fungus/candida infection can do. It had taken until 1999 for the Mayo system to realize most sinus infections are fungus and the use of anti-biotics only add to it.

If you check out fungus infection sites on the web you may see a list of your symptoms. It will explain how and why fungus has developed.

You will have to be very persistant with your doctor or fing another one. Fungus infection is not something they learn in school. They need to be educated by patients or experiencing it first hand.

And on last thing, of course, women are more proned to having yeast infections. Lucky us!
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752530_tn?1233522788
I had hysterectomy due to endometrosis and vericose veins of the overies at age 25. Was dx in 1995
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752530_tn?1233522788
Forgot to add that I also have fibromyalgia and B12 def. Also high blood pressuer
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551343_tn?1350880995
so far i have over 75 women with endo and MS. Received 3 more this morning.

Its quite enlightening really. Have to think of where to send this information as I am sure it has a bearing of why some women are getting sick.

What do you think? (I live in the UK).
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147426_tn?1317269232
You need the info about how common endo is among women without MS.

The UK and several European countries maintain databases that have this kind of info for hundreds of thousands of people.

As a test, you might go to a forum for a disorder that is not autoimmune, like heart disease and ask the same question.

Quix
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737386_tn?1254354026
I had endometriosis, fybriods and ovarian cysts. First requested a hysterectomy when I was 26. Finally had one when I was 39 and oophorectomy almost exactly a year later.
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763122_tn?1234420501
partial hysterectomy at 38 years old, softball sized endometrioma removed at age 40, complete hysterectomy at 41.

I am positive for Lyme disease and am in limbo with MS. I too have noticed all the women I have encountered with MS, Lyme, fibro etc..... have had hysterectomys and or endo....I think it is much more than a coincidence.
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1074733_tn?1256235219
I know this was posted a long time ago, but I just read this and really wanted to post since I too believe there is a connection with endo and MS. I truly believe endometriosis is an immune disorder and immune disorders do tend to run in families.

My family has a history of immune disorders. In my mom and dad's families there are or were multiple cases of MS, Lupus, Thyroid (Hashimotos), Sjogren's, Celiac, Endo and RA. Several of my aunts are currently on thyroid medications. My sister (age 36) had to have her thyroid removed because her immune system basically destroyed it. My other sister has endometriosis.

My problems started as a teenager, but were ignored for a very long time. My endometriosis and adenomyosis were diagnosed at age 28. I had a hysterectomy at 29. Neurological problems started in my 20's, but MRI was negative. Was diagnosed with peripheral neuropathy. I am now 40 and I'm awaiting new tests to see if I have MS.

Was diagnosed with pernicious anemia which is only resolved with B12 injections. I self-inject monthly, and this helps with my mood and vision, but not numbness, tingling, fatigue, urinary and bowel problems, weakness, cognitive difficulty or clumsiness. I tried a gluten-free diet to see if it would help my neurological symptoms, as it did my daughter, but it didn't.

Youngest daughter was diagnosed with celiac (which has been linked in studies with endo) Her neurological problems resolved on a gluten-free diet. Oldest daughter is 16 and is already showing signs of having endo (that are resolved on birth control). She has neurological issues and couldn't walk when she started going through puberty. She had a negative MRI, but was diagnosed with psoriatic arthritis. She is also estrogen dominant like me. Oldest son is 21 and has ADHD and narcolepsy.

I follow medical studies closely because I feel there is a connection that researchers are on the brink of discovering. Perhaps they will be closer to a cure and a way of preventing immune disorders in the future!

Tina

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1068422_tn?1293687853
Hi,

I am in limbo land possible MS...We are in the process of doing all the tests

I had endometriosis, cysts and ooparectomy (sorry about spelling) when I was 44.  At 44 1/2 they took the other ovary and did a hysterectmy.

Susie
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1068422_tn?1293687853
Sorry about that I am a goof...I am 47 now and that was in 1997....so...that was 12 years ago....gosh, has it been that long?  Time flies when your having fun!  Anyway....35 years old...duhhh..

Susie
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410281_tn?1254232664
Wow!
I had a partial at age 29 becuase of fibroids. My chronic headaches started six months later for almost 2 yrs, then four months of normalcy, then this other stuff started and it's been a year now.

All the docs said because i kept my ovaries my headaches could not have been caused by hormones.
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Avatar_f_tn
i have had endometriosis since i was 13 dx eventually when i was 19 which was 11 years ago now and very rare to have it from such a young age.

i have not had a hystorectomy.

i also have pernicious aneamia!!

not dx as MS but in limbo have lots of neurological symptoms and i am having a brain scan on 2nd Nov.

i think your research makes very interesting reading and maybe there is a link, maybe if you are vulnerable to one autoimmune disease then you are vulnerable to having a few

take care x
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1068422_tn?1293687853
You made a comment that made me think...

It was: i think your research makes very interesting reading and maybe there is a link, maybe if you are vulnerable to one autoimmune disease then you are vulnerable to having a few

I am a Type 1 Diabetic who also has Crohns Disease and now suspected MS...I would say three is enough!

Susie
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1063113_tn?1254964439
Very Interesting Maria.....I was dx with Endo in 1999....suffered horrendously with it but no hyst...however after 3 ops Im now managing it great with treatment....but what interesting findings!! xxx
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Avatar_f_tn
Hi there,

Here is my story. Sufferred with lower pelvic pain for seven years, which was very debilitating at times. I was told I had Crohn's, I took steroids for 1 hr. Pain didn't go away. Gynecologists refused to look into this more stating it was my bowels. 7yrs later after seeing several gynecologists I finally found one that believed me and found that I was full of endometriosis. I took Lupron Injections for 8months all my pain went away.

Total hysterectomy done at 33. My bowels have no sign of Crohns to date.

I am awaiting a third neuro's opinion all the MS mimics have been ruled out so far. MS Neuro said my spots are possible Virchow Robin Spaces, and said I didn't have MS "today".

I am a few weeks shy of my 35th B-day. remain un-dx
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1063113_tn?1254964439
Hi weemee I was also told in 07 I had PA! Strange how we all seem to have lots of side line illnesses in common too isnt it! Did you know you can have neuro damge as a result of the PA too....I was left until the very late stages before anyone would actually take notice or test for B12 def, and Ive ended up with damage as a result of this. Being managed and also on monthly B12 Injections now which helps lots....but still no firm dx of MS althought for 2.5yrs now my Gp and a hosp Dr have insisted I have PPMS........Apparently because of the McDonald Criteria its making things harder to dx and I only had one cluster of leisons back in 07 at last MRI but been referred for another one with an MS specialist consultant so see how that goes at the time!! Oh joy!! take care xxx
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Avatar_f_tn
Made a typo in my post. I stated I took steroids for Crohn's for 1hr.. I wish. I took them for 1 yr.
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867787_tn?1318939830
I had endometriosois at 19 & a hysterectomy at 31. Had R.ovary removed 3 yrs ago due to hemmoragic cyst & I'm probably going to have to have the L. ovary removed also due to cysts. This is very interesting! I am now 40 & in the probable MS category though I'm still not dx'd.
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Avatar_m_tn
I was had ovarian cysts removed at age 12 and after 3 yrs of misdx's, I was dx with endo at age 15.  I have had serveral laps, been blessed w/ 2 beautiful children who were both delivered by c-section, and have been on numerous drugs.  In April of 09 (age 28, I went to my obgyn to request a hysterectomy.  At this point I was completely sick of my periods controlling my life.  They would last 2-3 weeks with extremely heavy bleeding and cramping and I could barely do anything.  When I wasn't on my period, I was playing catch-up from all my down time with pain.  She recommended continuous bc.  Which I did from then to last month, when I started bleeding continously for about a month including cramps!  She put me on the dreaded Lupron for 3 months.
After I saw some one eles say something about endo and ms, I decided to search it and found this.  My mother, who had serval miscarriages and was probably never diagnosed - not surprisingly, also had ms and fibromyalsia (fibromyalgia).  She couldn't take the pain anymore and completed suicide 13 years ago.  It scares me to think that I could be going down the same road.  I also would be interested in taking a poll or survey.
Jen
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1088527_tn?1308136926
endometriosis  and other complications led me to a hysterectomy at 27 they left 1 ovary but that ended up removed 5 yrs later. I have been diagnosed 6 months ago with lupus at age 39
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Avatar_f_tn
I have had endometriosis for about 10 years and I had a hysterectomy last year (34 yrs old)...I now and showing many more signs of MS than I did before my hysterectomy and am fighting with many Dr's bout my symptoms.....I wish that it wasn't so hard to get Dr's to listen to you when you know that there is a major issue in your body....after 2 tests they are trying to rule out MS but yet not only are all the symptoms still there but they are progressively getting worse day after day.
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551343_tn?1350880995
Hi after 7 years I had a diagnosis by a private doctor for MS and co infection of lymes.

I have been so sick of late saw my GP, and he has now said that it would be more then or highly unlikely that I didnt have MS, and wants me to have another MRI, as I have lost sensation totally in my left leg now.

Both my daughters have now been diagnosed with endometriosis, one has had to have a hysterectomy.

DONT GIVE UP whatever you do keep going for it. You know your own body. I knew i had MS when I went blind.

I also had optical neuritis.

Although i try to stay positive and do things (I keep chickens), every day is now a struggle and my resolve to keep going is waning every day.

BUT you must not give up hun please keep going you will get answers you will see.

I am at rest now with my MS I know it is that, and so do my doctors.

Take heart and a big hug. Mariax
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Avatar_f_tn
I am 42 yrs old and I had my partial hysterectomy when I was 27 yrs old due to endromitriosis. I had just had my 2nd son when i was diagnosed. I had lapro every month sometimes twice in a month. My Ob that delivered my son refused to give me a hysterectomy due to my age in case I decided that I wanted more kids. Mind you this was after he told me that if I got pregnant again either me or my baby could die. So I got a second opinion and the second  doctor told me that with as severe my endromitriosis was it was my only option. I still have my left ovary and recently I was suffering with a kidney stone and it got so bad that I ended up at the ER. They did find blood in my urine but there was nothing in my blood work. They sent me in for a CT scan they said that they couldn't see the stione but they found a cyst on my ovary. They sent me for a ultra sound and they told me that it was a little larger then a golf ball, then they sent me home  and said that I should get in to see an OB soon. They didn't give any further info about the cyst so I don't know what kind it is. I haven't been tested for anything else. I was also wondering if the endromitriosis could still be affecting me?
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4083235_tn?1351035852
I am a limbolander and had a total hysterectomy 7 years ago d/t severe endometriosis.  My mother and 1 of her sisters have had a hysterectomy as well.  My grandfather had Hashimoto's thyroid and my mother and her sisters all have hyptothyroidism.  I have an aunt on my father's side with RA.  Interesting correlation....hmmmmm
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1437229_tn?1296073620
I was 29 when I was diagnosed with endometriosis. As a result, I had a hysterectomy/oophorectomy at age 29.

I have a diagnosis of MS.

I did some research several years ago, and found that most women with endometriosis severe enough to warrant a hysterectomy young also began their periods at a young age.  I was 8 years old when my periods began.

I wonder if that has anything to do with the onset of MS.

Most sincerely,
Beth
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