Stage 4 endometriosis

by Endochick
(Denver, Colorado 80202)


I am so excited to have found your endometriosis site. I've been going through a rough patch, and was so happy to have received the invitation to join your group.

I started with horrible pain in the 5th grade - but endometriosis wasn't a common condition at the time.

I have wide spread endometriosis including on: bladder, bowels, tail bone, endometriosis on nerve endings/nerve pain, abdominal area, endometriosis large nodules wide spread throughout my body and under the skin, and rectum (can hardly have a bowel movement without pain, including the intense pain that comes with bowel movements. Severe pain symptoms daily, the very worst during ovulation and period' scar tissue, adhesions, and various cysts and cyst ruptures (monthly).

Over the years, my endometriosis has gotten much worse -- trying all the options from laparoscopy surgery, and it just grew back again and again (even worse); Lupron (horrible time in my life); birth control pills (just feed the endo with synthetic estrogen), so the endometriosis spreads like wildfire; endo feeds endo, so it spreads quickly; plus birth control pills caused panic attacks as one of the side effects (synthetic estrogen is the enemy) as it just feeds the endo, which feeds on existing implants, and the more it spreads.

I have tried various medications like NSAIDs (anti-inflammatory drugs). Ponstel is one that I use - and was developed as a prescription to help with painful ovulation and periods. That said, narcotic medication has been the only option that has worked for me.

I have a wonderful doctor who treats my severe endometriosis, with narcotic medication, and for that, I am so lucky!

I have a wonderful husband! I have been married for 15 years -- and he is still hanging in there with me. It is not easy to have a spouse go through watching their wives, but can't really help. My husband is a chef, so I have help with eating right -- and he goes to all my doctor appointments.

He even runs to the pharmacy for my RXs. He is always there for me, but it is hard. Intercourse is horrific - so much pain. And yet, he stays with me. Cares for me, loves me. But I know that this disease has not only hurt me, but has hurt him too - all his hopes and dreams that won't come true because I have this incurable disease, including being infertile due to endometriosis.

Thank you for letting me share my experience! Hugs to all you brave women!

Endochick

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Sep 30, 2014
Nobody else understands this except us
by: Becky

You can see my original post dated April 25, 2014. I've gone through and read more and more of OUR stories. Nobody but those of us that suffer with this can possibly know what we and our husbands (those of us fortunate enough to still have one )go through.

I also continued to have endometriosis grow back after numerous surgeries. There was a period of time when I had an abdominal surgery every 9 months x 4. Each time, more endo & chocolate cysts found. My husband is also very patient and loving. He has been so very supportive . . . but he is a man and still has desire. It makes me cry sometimes that I have NO desire. I miss that feeling. But I know intercourse will only be painful - no pleasure in it for me any more. We have found ways to be intimate without causing me pain. (I'm only 57 years old, and I've been this way the last 15 years.) Again, I urge all of you to find a pain management physician that is willing to work with you to help manage your pain.

My pain doc has literally saved my life. AND - ALL you and your husbands should read ENDOMETRIOSIS SOURCEBOOK published by the Endometriosis Association. It is also a life saver.

Sep 23, 2014
My pain
by: MA

My menstrual pain started after my first c-section, however it got worse after I had 2 more c-sections. over the years my pains kept increasing to the point where over the counter meds won't work and i had to take trips to the E.R.

I'm at a point right now where I can't work, I can do nothing without pain. I feel guilty as I have to get light work load while my co-workers work hard. I can't do do much at home, I pee so much sometimes it makes me feel bad. My lower back is killing me with or without the movement of my right leg.

I went to the OBGYN who did an transvaginal ultrasound and found a small fibroid which she said is not the reason for all my pain. I feel like everyone seems to lose track of my constant everyday pain and I need answers now. I have not yet been diagnosed but a lot of my symptoms says endometriosis. Can anyone PLEASE HELP. I need my life back!!

Apr 25, 2014
I've lived with Stage IV Endometriosis for 30+ years . . . .
by: Becky

I was first "officially" diagnosed 22 years ago. Strong family history including mother,sister, grandmother & we suspect great-grandmother. My sister's and my OB-GYN has stated on more than one occasion "it's a good thing you girls had boys" ... my sister and I both have 2 sons.

Endometriosis, for me, is like having cancer without being terminally ill. I've had over 12 abdominal surgeries in the last 22 years, including 3 hernia surgeries due to the endometriosis surgeries.

About 8 years ago, when the symptoms returned AGAIN, I finally asked my doctor if I could transfer my care to a Pain Management Specialist because I simply felt having more surgery was the definition of insanity. BEST THING I EVER DID!

My pain management doc is the best (his wife has endo) and he has literally saved my sanity and my marriage. Good luck to any and all that have to live with this horrible disease.

Sep 11, 2013
severe mood swings
by: LS

My husband used to be that way but now my endo is so bad and painful that I am in constant mood swings. I am afraid since my family doesn't really understand my disease that its going to end up causing my divorce. I would have never thought in a million years that we would drift apart because of all the problems with endometriosis and my extreme fatigue.

I don't want to be in constant pain or take pain meds or not ever want to go anywhere but I can't control anything. Glad you are accepted so well. I used to be after my two surgeries between pregnancies but now I am always exhausted, hateful, and in pain.

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