Endometriosis story

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

Total hysterectomy at age 28 after 5 other surgeries to remove endometriosis

by Kate English
(Alabama, USA)

I had a full hysterectomy at age 28 in December of 2012. Just a little over a year ago. It was my 6th surgery.

I was diagnosed with Endometriosis Stage IV in March of 2012. It was done by my old OBGYN and she left the disease behind and in my pelvis and also left behind a dermoid cyst.

I was told during my post op appointment that I had severe endometriosis and she got what she could. She injected me with Lupron 5 days post op.

I was given no info, no pamphlets on Lupron. I was just told it was my next course of action if I ever wanted to conceive. Which I did very much so. My life dream was to be a mother of 6 or 4 children.

I had horrible reactions to Lupron and knew something was still very wrong. But My surgeon had told my parents while I was in recovery that my pelvis was clean and I just needed to let the Lupron work. I finally made an appointment and went to talk to her about seeing an Excision Specialist. She advised against it.

I went anyway and I went a state away to The CEC (Center for Endometriosis Care) in Atlanta, Georgia. I had an excision laparoscopy in May of 2012, the day before my 28th birthday. It was over a 4 hour surgery where I would be diagnosed with Stage IV endo.

It covered every organ in my pelvis almost, even my appendix. The surgeon removed my appendix. He removed 2 large endometriomas and the dermoid cyst that was left behind. My sigmoid colon was immensely involved and was stuck to my pelvic side wall. It was a mess.

My surgeon also removed a polyp that was in my uterus. It was also suspected then that I may have Adenomyosis (Endometriosis of the uterine wall...uterus). I was 146 points out of the 150 on the grading scale as far as the severity of endometriosis.

Fast forward to July, I was having severe pain still and issues with bowels. I sought the help of a local surgeon. He did an excision surgery where endometriosis was found and he freed up my left ovary which had adhered itself to my pelvic side wall.

He removed cysts from my ovaries. He also removed another polyp from my uterus and freed up adhesions.

He injected my pelvic floor muscles with Botox.
I was in the ER 2 days post op as I was in severe pain. I had a ruptured endometrioma cyst and blood pockets in my pelvis. I also had an adverse reaction to the Botox injections. I was on Demerol for months and bedridden.

Fast forward to November and I was having severe pain and in and out of the ER with large rupturing cysts.

I contacted my Specialist back in Atlanta, GA. We scheduled another excision surgery. My Left ovary was removed due to large cysts. Adhesions and endo were removed again. I also had a PSN to sever the nerves to and from my uterus. I also had a Mirena IUD inserted while under to help.
It was basically my last chance at saving my uterus and remaining ovary (R).

Fast forward 2 weeks and I was still bleeding. I normally had post op bleeding so did not think much of it. Until it kept getting worse. Then, I began passing fleshy blood clots. Then I started haemorrhaging after 2 failed ER visits.

I called my new local GYN and he saw me and yanked out the IUD on the exam table as blood dripped down the white paper that lined the table.
The next day I kept bleeding...and bleeding. It just kept coming.

I called him again and he said to come in. I waited and it seemed to slow down so I called back and reported that to the nurse. Fast forward a few hours and I was bleeding even more. I called and he told me to come in. He immediately called the OR for an OR table after doing a pelvic exam. I was prepped and had an emergency D&C in a matter of hours.

After surgery, the GYN said he could not find the source of bleeding and would encourage the hysterectomy. He said he thought the IUD (since it had perforated my uterine wall...had cause Endometritis.

I called my Specialist in Atlanta, GA again and scheduled the hysterectomy for 2 weeks later.

Three days before my hysterectomy, I could not take the severe pain any more. I went to the ER in Atlanta and was admitted. My right ovary now had several large cysts on it. I then had an emergency hysterectomy on December 11th, 2012. That day will forever be seared in my head, body and heart.

Pathology showed Endometriosis and Adenomyosis.

Here I sit a little over a year later and in severe pain. I just lost a job I LOVED due to passing out and puking from the pain and swelling on the job. It is extremely painful to have a bowel movement and I am in severe pain.

I know endometriosis pain oh too well. I lived in denial for awhile and now my body is yelling at me to get help.

I just do not know where to turn. I have seen 4 local Dr's and they all say I am high risk and there is no way I can have endometriosis after a full hysterectomy. And even if some endometriosis were to be left behind or missed...I am not on enough synthetic estrogen to feed it. I know my body.

I am beyond desperate and on the verge of losing all hope. I have fought and fought. Here I sit feeling like I am back at square one, or worse.

I pray for strength and hope daily. I raise awareness on Instagram daily so that I can give this awful, life changing disease a voice. We need a cure and to be heard. My heart goes out to future generations.

I believe if I were diagnosed earlier...I would not be sitting here typing on this laptop at 2 am in severe pain.

Comments for Total hysterectomy at age 28 after 5 other surgeries to remove endometriosis

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Oct 29, 2016
Endometriosis and partial hysterectomy
by: Anonymous

I had surgery on Monday again due to stage 4 endometriosis it was everywhere... My on ended up giving me a partial hysterectomy due to the amount and pain I was in. He kept my ovary, telling me it could possibly come back... I'm still in severe pain. I'm pretty sure its from the extensive surgery I just had...

I can't pick my babies up for 2 weeks😖... I had surgery for endo back in January 2014 after I gave birth to my second daughter in October 2014. While I was pregnant with my daughter I was placed on bedrest due to the amount of pain I was in and I bleed the whole time I was pregnant...

It was a miserable pregnancy and at one point I was hospitalized because my daughter couldn't get oxygen due to the swelling due to the endo...

Then I ended up getting pregnant with my third daughter n had her 3 months early due to the endo .. She I hemmoraged with her I almost died along with my daughter it was horrible... She was in the nicu for almost 3 months... I've had severe pain also in my back due to endo due to endo for 2 years after giving birth n I just had the surgery Monday October 24 2016...

Oct 16, 2015
Rethinking a total hysterectomy
by: On the fence

It took forever for me to get doctors to take the pain I was experiencing seriously or acknowledge that the endo (which I've had scraped twice during previous surgeries) was causing it. In the meantime I'd been misdiagnosed as having diverticulitis, chronic constipation, etc.

From my research and talks with other women who've experienced this, I was sure a total hysterectomy was my only option. I met with a great surgeon who didn't pressure me either way, but instead listened to what I wanted. At the time I thought that was a total hysterectomy, which I'm scheduled to have next month.

However, prior to going to the surgeon I'd gotten the idea to try yoga to relieve the intense pain I was experiencing. I sought YouTube videos that suggested poses for endo pain relief and stumbled across a 30 Day Yoga Challenge. I took the challenge and was amazed to discover that doing daily yoga nearly eliminated my pain completely.

I continue to do yoga at least every other day and it has completely changed my quality of life. I can't recommend it highly enough. I'd planned to go ahead with the surgery because I was afraid of what damage the endometriosis might already have done to my internal organs, particularly my intestines.

But nearly from the moment I had a surgery date scheduled, I began to wonder whether I still need the total hysterectomy since I'm hardly experiencing any pain now. After reading some of the comments here (and learning that even with our private insurance, I'll still be responsible for quite a bit of the cost), I am considering cancelling the surgery.

Jul 31, 2015
by: Anonymous

I have all the sympathy in the world for you. I am 27 years old. In 2012 I had an emergency c-section and somehow they left the placenta behind. 5 days after giving birth I struggled to urinate. Went to a local doctor and he said something might have stayed behind in the womb.

He gave me antibiotics but I was still struggling to urinate after the course. Went back to him and he referred me back to the hospitals gynea's where they did a sonar scan but saw nothing. They gave me antibiotics as well and I literally felt how life was starting to drain out of my body. I was cold. 3 days after the course my placenta fell out. I went back to ER and they performed a D&C.

My life was ruined after that. They sucked all the endometrium out of my womb and left me with Ashermans Syndrom. I don't even menstruate any more since the D&C. I suffer from poly-cystic syndrome as well. They can't even perform a pap smear because of the adhesions. Not even the tip of a needle can enter my womb.

Always in pain. According to them my pain is all in the mind. I'm always bloated. My breasts are sore and my mood swings are a mess and I'm still stuck with a useless womb.

Apr 06, 2015
The pain
by: Anonymous

Trust me I know how you feel. In 2012 I had a partial and they said oh you are fine, but my body is still in pain. Come to find out during surgery it was said that I had Focal Adenomyosis. Now they tell me I may still/have endometriosis, i have cyst on both my ovaries.

The VA doctor doesn't want to do another surgery. I have had the Lupron as well in 2006 no help, so here I am no 2015 and just got the Zoladex... I'm tired of the pain and discomfort during sex.

Jan 09, 2015
Older lady
by: Marie gaburiel

Age 57 and had full hysterectomy when I was 31. I have 2 grown children t g .on hrt since then have had no symptoms of endometriosis. I had bladder incontinence got tape repair and I mentioned I also had discharge from my vagina. The doctor says I need to have to go back to find out why my small bowel is leaking he mentioned the possibility of the return of endometriosis.?

Dec 07, 2014
So much pain!!!
by: Rudycat

I have had an aweful time for the last 19 years! After having my second child in 1995 I started to have severe pain in my left side. My obgyn ( who was very old school) kept telling me it was nothing, just due to my cycle. He kept putting me on birth control saying it would help with things.

After having my son in 1998 things got progressively worse. He still tried to tell me it was nothing just my cycle. After almost passing out at work from the pain, I was taken to the ER where I had a very thorough exam.

I was told my insides were a mess and needed to get things " taken care of asap". Needless to say 4 surgeries later I am once again in agony.

I had 2 laparoscopic surgeries which didn't help. A hysterectomy leaving my right ovary. Lo and behold a year later the right ovary has cysts and has to be removed.

Now a year down the road I am in severe pain and sex is very painful on my left side.

Any thoughts or words of wisdom would be helpful. I have an appointment to see my Dr Tuesday, but wonder of I should see someone else now.

Sep 17, 2014
I also had a hysterectomy at 28.. Let me know if u need someone to talk to!
by: Cherie

Hi! I came across your story and have some relation to what you are going through. I was diagnosed with stage 4 coin Cancer in 2012. I was 28 at the time and had a hysterectomy to avoid future complications while having my big surgery.

From today. Counting back; I had 8 surgeries:( Tqo of them being c-sections (not cancer related). I wanted to meet others that had a hysterectomy at an early age.. Please if you need a friend for support, advice, comfort or just to talk then I'm glad to help in anyway possible:) Anyone reading this & need a friend to speak to then feel free to email me😊 cherrylane14@yahoo.com

Best wishes,

Aug 13, 2014
Living in pain
by: Anonymous

OMG my heart goes out to you. I found out about a year ago. I am in such pain I cant take it. Reading your story breaks my heart. I don't know why this disease causes so much pain. I was ready to have a Hysterectomy because the pain came on so fast and wrapped around my back that I cant walk some days, but now after reading what some of you have wrote I don't think I should do it.

Apr 26, 2014
Endometriosis and hysterectomy
by: Anonymous

I also have endometriosis, I was diagnosed in May 2012 and had a partial hysterectomy with left ovary removal in November 2012. All I can say based on my experience is that I wish I did NOT have the hysterectomy.

I had severe pain for years and no one would look inside. When I finally had the diagnostic laparoscopy in May I was in more pain than I was before the laparoscopy. After six months of bleeding and pain I asked for the hysterectomy, I was 34 years old.

When removing the ovaries and uterus you open a can of worms for other issues to arise, and I too still have pain. I am going through pelvic floor therapy and have urodynamincs testing scheduled in a week for urinary in continence.

You don't know how the surgery will turn out and I urge every woman to fully educate themselves before resulting to a hysterectomy. After reading your story, I think some of your pain is from scar tissue, start with castor oil packs, Mayan abdominal massage, acupuncture and yoga..the castor oil will soothe the skin and help loosen the adhesions, the Mayan abdominal massage will be therapeutic, while the yoga will stretch your body and internal organs.

I have found some pain relief with this combination. Also I eat a gluten free diet, no sugar or dairy to reduce systematic inflammation. If you have low belly pain you might want to look into Interstitial Cystitis it does go with endometriosis and I have both.

I couldn't recognize the IC pain before the hysterectomy because everything was burning inside, now just the bladder burns and where the left ovary was removed. Good luck!

Apr 21, 2014
Endometriosis sufferer
by: Carrie

I am sorry for what you have gone through, and are still going through.

I am 34. I too have severe endometriosis. I am meeting with a surgeon next week to discuss a hysterectomy. That was a recommendation made to me about 2 years ago when I had a laparoscopy to confirm suspicions of endometriosis.

My husband and I were going to pursue IVF before considering the hysterectomy, as we were told this was our only option to have a child. After over a year of preparing, saving money and getting my hopes up, 2 weeks before we started our IVF treatment, we were told by the best endocrinologist around that I am not even a candidate for IVF due to the adhesions from endometriosis cementing one of my ovary's to my uterus and the other damaged due to a large cyst.

They cannot access my eggs without puncturing my uterus. That news broke my heart! We always wanted to have children. But I had no idea! I had no idea that endometriosis could reoccur even after a hysterectomy. After reading your story and others, I have a whole new set of questions for my surgeon!

So, thank you. Thank you for sharing your story. I know that it must have been difficult, but I truly appreciate it.

I hope that you are able to find a solution. I agree that we need more awareness for this disease. Seeing this disease on the worst end of the spectrum also makes me wish that doctors knew more about this disease, or that there was more research going on.

Please know that you are in my prayers.

Feb 06, 2014
Hope this helps
by: Francine Monfils

I have had 6 operations all because of endometriosis and poly-cystic ovaries. Had a hysterectomy at 37 yrs old, and still suffer today with the endometriosis.

I too was told just get pregnant and you will be ok, Well I do have 1 daughter and I am thankful for that, but she too has the same problems now.

I am 54 and have been on Depot Provera shots every 8 weeks to stop the operations and cysts and pain. I don't know what they will do when I have to stop taking the Depo shot, that is the only thing that has kept me from having any more operations. Its been 14 years since my last surgery.

Try the Depo It has saved me for a while !!!!

Jan 11, 2014
Prayers sent to you
by: Anonymous

I feel for ya..I'm sorry your suffering in daily pain. I too have endometriosis from top to bottom of stomach, intestines, bowels, bladder, liver and everywhere else too...I was blessed with twins in 2010.

I had been told by 5 different Dr's that I'd NEVER have kids and miracle's are here..then in Nov 2010 (kids were 6 months) the pain was unbearable and I went to ER where a pelvic absess appeared.. after a total of 4 pevlic absesses I was still alive (the Dr's did use paddles to keep me alive) I was septic from the absesses bursting.

4 surgery's in 34 days and 4 more since...I've had 8 surgerys since my twins were born and STILL haven't got all the answers.. Good Luck and I'll be praying for ya...Hang in there

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