Endometriosis story

  These stories can help other women so they do not feel so alone when trying to cope with effects of this disease.

Endometriosis 1 year after hysterectomy

by Maggie
(Crown Point, IN USA)

I had a full hysterectomy (everything taken) 1 year ago. I have been sick as a dog since -----have gained 35 unexplained lbs. ---- and continue to have more severe endometriosis pain than before the surgery.

NO I would NOT encourage anyone to do this surgery. My life has been horrible since .... I missed so much work during the year I nearly lost my job ---- if I'm not working I'm in bed --- I am currently seeing an endometriosis specialist to see if he can help ...... he thinks I have it everywhere including liver/kidney area.

None of this was cleaned up when I had my hysterectomy surgery. I was an in shape 51 year old & now a fat, sick & lifeless 52 year old (feeling like I'm 93!)


Name: Krista

Title:You're not alone

I'm so sorry you are going through this. I am in the exact same boat, only I'm 30. I had the surgery 10/2011 and feel worse than ever! Missing out on life, work 3-5 days every week! Missing my 6 yo son grow up, football games, my hubby, life! It is awful!

I have been to 2 different doctors including the one that did my surgery and several ER visits only to be treated like a junkie wanting pills! That is so not the case! I tell them to look at my chart before I had the surgery and they will see I didn't take as much as a Tylenol before, now I'm living in hell!

I'm glad you found an endometriosis specialist. Is she/he local to you? I'm in Northern KY and desperately needing some help before I loose it completely! I know it doesn't help you feel better knowing you are not alone, but perhaps we can chat online or offline to share stories and offer advise.

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Nov 02, 2014
Partial hysterectomy age 52
by: Anonymous

Had hysterectomy 1.5 years ago. Felt great then 6 months ago pelvic pain returned. Ultrasound showed complex cysts on both ovaries. Seems women with endometriosis develop these even after menopause. Was on half of the lowest dose of estrogen patch for only 10 months.

My doc knew I had endometriosis said there was lots of scar tissue in pelvic area from it. Guess I will have the ovaries out but will refuse any estrogen. My body feels like I have enough of it no hot flashes.

Women with endometriosis should never take estrogen. Could not believe my doc wanted me to go back on the estrogen patch she said it would help my pain. I am going to find an endometriosis specialist at UCSF and change my diet forever.

Thank you for this website!!

Oct 27, 2014
Estradiol is Endometriosis candy
by: jaxvirtualpain

I have read about some of you taking estradiol after having a total hysterectomy. If you have endometriosis, I would not take estradiol. I was put on that after my second surgery when they took out my ovaries and Fallopian tubes. I ended up back on the operating table with an open abdominal removing part of colon, a mass in my sigmoid area and lesions in my rectum area.

I was told not to take any more estrogen containing drugs because the endometriosis does feed off of that. That is why I ended up with the "Endo" again. I am even trying to make sure that the food I eat has no hormones in them. Estrogen is my enemy.

I will try organic progesterone because I have been reading that it will help menopausal symptoms and help keep endometriosis at bay. Good Luck ya'll

Sep 25, 2014
Difficulty dealing with the reoccurring pain
by: Anonymous

Two years ago while seeing my OBGYN I discussed the heavy cycles, headaches, numb arm, rapid heart beat, fatigue,and inconsistent cycles. During my routine exam, a tumor was discovered and a partial hysterectomy was recommended. I proceeded with the recommendation hoping all the pain would go away. However, during the procedure my doctor had to consult with my husband to remove everything due to the endometriosis. Not only was this disease all over my uterus, but also on my kidneys and colon.

My system went into shock and my colon became paralyzed. I later dealt with two ruptures and repeated issues with my colon. Things are still not right and the pain is returning with a vengeance! I'm not sure how to deal with the pain or who to turn to for assistance. I just want to be pain free.

Apr 13, 2014
sick of being sick
by: Anonymous

Had a total hysterectomy in 2012, due to large tumours on both ovaries. Dr. believed them to be cancerous. I instead had severe endometriosis. Now two years later same old pains. I'm fearful. I did not know and was not told endo could come back and to other organs. Pray for me. Thanks!

Nov 03, 2013
Me too
by: Anonymous

I'm a 34 yr old mother of twins that has suffered from endometriosis since I was 14 yrs old. I had a PARTIAL hysterectomy to hopefully help but the surgery didn't go well and I ended up with 4 pelvic absesses, 3 of which ruptured.

I missed my twins 1st Christmas and many other of their firsts from being in hospital. I fought the Dr's when they told Hubby to say good bye to me (they thought I was going to die 3 times) but I'm still breathing.

I suffer daily pain and got to my local ER a lot. Good thing most of the Dr's there know my story and know that I'm not a junkie looking for pills. I have seen many OBGYN's here and NONE are willing to "fix" it or look at it.

I finally got a referal to a pain clinic and hoping it's soon. I've thought about running away from my family so they can live a happy life and not watch me suffer. I'm at my wits end again..:'( I hate taking pills, I hate being in pain. I just want to be a good mom and wife

Sep 20, 2013
Total hysterectomy
by: Anonymous

A year ago I had to have a total hysterectomy (everything removed including uterus, ovaries and fallopian tubes) because of endometriosis. I now have to take "estradiol" - hormones to try to balance out my body - but it has weird side effects like hair thinning and absolute frozen hands and feet.

All that is pretty horrible. I don't know if its the hormones that I take - or the operation - but it has put me on disability. Am also very tired - sleep the night and most of the day. Does this happen to any or you out there?

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