Hi Jan! Yes, I had stage IV Endometriosis. It's interesting that both of ours took years to diagnose. Yet another disease that doctors 'blow off' until it's too late.
I had 2 large tumors removed in 1990; the doctor told me there were "hundreds of implants, if you want to have a baby get pregnant now" I had to be on Danizol for a year. Then in 92 a complete hysterectomy. I was 31.
I have also read the info. about it being an autoimmune disease. I really believe that it's a strong possibility. I asked a rheumatologist that and he got really defensive about him not believing it.
Believe it or not I also found articles that said a person with Endo. is slightly more likely to develop MS. Wierd huh. But, it does go along with the other autoimmune stuff.
I'm a limbolander, but some of my docs believe MS. I had a hysterectomy in 2006 due to a uterus prolapse. My Gyn said that I also had endometriosis that was undiscovered. He didn't say what stage it was, but according to him it was working it's way through the uterine wall. He also said that this was the cause of all my abnormal uterine bleeding.
I've recently lost my ovaries..left one in 2008, right one 2010 due to ovarian cyst. My ovaries would move and reattach to other things..like my intestines, bladder, and abdominal wall.
I would also wonder if they did start to classify it as an autoimmune, whether or not it has a hereditary link like other autoimmune diseases. Endometriosis is common in my family.
yep i first started with abdominal pain after i had an appendectomy when i was quite young. I had horrendous period pains and very heavy, i had pain eventually even when i passed urine. I had 2 x cysts removed first i had laparoscopy, and then laparotomy to remove the cysts which were enormous.. I too suffered for years before i was diagnosed. After they diagnosed endometriosis stage 3 it got extremely worse so hysterectomy was my only option at 34 . im now 47 and have been on estroderm hrt patches ever since ..
i have suffererd lower back pain ever since.. i had my ovaries removed but they left my cervix cause i was only young. i still have smear tests. i too was on danizol which made me blow up from size 10 to size 18 - gyne took me off em straight away when saw the weight gain.
god i couldnt go on holidays or partys or work most the time i was so ill.
i do believe this endo is connected to autoimmune, when i see my neuro again i will mention it for sure.
lots love jan xxxxxxxxx
I had periods and bloodclots that were just horrible. At the end I was bleeding at least 15 or more days. Then trying to recuperate until the next one.
I would present in the ER to ask for help. They alwas said "how many pads have you gone through in the past hour". Then they told me to go home. If they had listened I might have been able to same my ovaries at the least.
I had a cyst rupture and ended up in the ER. They did an ultrasound etc. They had me get dressed. The doctor came in---this is exactly what she said: "you need to call your doctor as soon as possible, you have two large masses in your abdomen". Then she walked away.
Did you have to go through the test where you had to take in as much water as possible and then they would push on this ultrasound thing and take pictures of your ovaries or bladder or something. Then the tech would put even more fluid in and you had to hold it in. aaaaahhhhhh that was really hard
I still have back pain and pain with bowel movements at times. There are times I have pain in the pelvic floor region that I could just swear it feel like endometriosis.
I was on HRT patches for a long time and then stopped. So many doctors and so many opinions.
wow i remember the horrendous water test it was terrible wasnt it xxxx i think i cried trying to hold water for so long - i tell u what i couldnt do it now i know for sure xxx
The ER you went to !!!! its disgusting how you were treated.
we do complain constantly in the uk about NHS service but sometimes you get fantastic service and treatment, because insurance and medical finances dont really come into the politics of it all, so im very glad for the NHS most the time.
If i had to pay medical insurance at the minute i would be dead i think, because ive been off sick from work for over 8 months. I live alone in a 2 bedroomed home and past 8 month have been getting £79.00 sick money from my employer per week. ( nothing else no help ) im so in debt with bills etc, and it all piles ontop of the stress of your illness of which im sure you are aware xx
hope other ladies post here who have suffered the dreaded endometriosis take care red cu soon xxxxxx jan
limboland but suffered from endo most of my life . I was diagnosed 3-4yrs after symptoms started my 1 gyn cut me open from bellybutton down and said well nothings wrong I changed mds to a female figured more compassion and she was a godsend after watchin me for 2 cycles 15-20 day periods she did a laparoscopy thru the belly button and found stage 3 endo she taped a note to my chest with a smile and the diagnosis. I was able to conceive I have twins and a boy but 2 miscarriages. I had a hysterctomy 3 months after the twins at age 26 my uterus adhered itself to my abdominal wall and the doc said well shes been thru enough hell and took it out plus 1 ovary. i have had 23 abdominal dsurgeries for mostly endo related problems. my other 1 ovary was removed few years later and welcome to menopause at age 28. I dont mind it at all no hrt for me I have tested positive for BRCA1
i have had to have a few more surgies since the for adhesions and endo is still on bowels . i just keep praying that my daughter doesnt have all these problems that I have had. she will be 14 end of the month but she has her period every 2 weeks or so so I worry.
you know I really didnt mind menopause at 28 after all the sh** I been through it was worth it no more pain no more periods and so forth. Then I found out that those darn adhesions keep messing me up and tangling my bowels up so its about every 5 yrs or so I have to go in and have them cleaned out. the last surgery about 3yrs ago they put some kind of mesh lining in there to try to keep things from sticking and I hope it works so far so good.
what a dam shame thats awful, i was so pleased when i had my hysterectomy. i was very upset initially as i had no children and had not long been married. but anything to get rid of the pain of endo its horrendous as u know xxxx
I just found this posting. I was diagnosed with endometriosis in 2002 when they removed my left ovary upon finding a large cyst. Then I was diagnosed with MS in 2006 then a seizure disorder in 2009. And antispholipid abx syndrome- blood disorder in 2013. Auto-Immune disease gets a hold of you and you can be screwed!
I suffered all through college. It continued to grow worse and worse. I had a hysterectomy/oophorectomy at age 29 in 1989. The endometriosis had destroyed my uterus and ovaries, and the surgeon had to remove 6 inches of my colon also. I never would have been able to conceive.
Hi There, This is my case,
I was diagnosed in 2011 with MS and previous to that I had an operation for Endometriosis, but never linked the two illnesses. I just had another operation for Endo Stage 4. And I havent have babys and I dont know what to do. :(
I had a hysterectomy in 1998, due to endometriosis. Then diagnosed with MS in 2010. Looking back I see that my MS symptoms started not long after my hysterectomy. I would never have thought that endmetrosis and MS were connected in any way.
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