Endometriosis story

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

Lifetime of Endometriosis

by Karen

I have suffered from endometriosis all my life along with my Mother and sister. I had a partial hysterectomy 11 years ago removing my uterus and cervix while in my thirties. Four years ago the symptoms came back fast and furious. I complained to my family doctor, who didn't think it was a re-occurrence of endometriosis, she sent me to a GI specialist.

After almost two years of seeing the GI specialist I was told I had IBS. A year and a half ago I had to stop working because of the symptoms and I just couldn't function. I started having anxiety attacks in October of 2012 which caused me to leave my job.

My family doctor prescribed cymbalta for the anxiety but did not address my concerned about endometriosis. Not being able to put up with the severe pain I visited the local emergency room at least three times from January to March of 2013. On my first visit to the ER I was told, after undergoing numerous tests and receiving pain medication, that it could be my endometriosis or diverticulitis. I was given a prescription for antibiotics and pain meds and told to come back for a ultrasound the following Monday.

In between getting the ultrasound results and an appointment with my family doctor I was back to the ER. I told the doctor what had been happening and that I had an ultrasound done. I was given meds for the pain while he went to retrieve the results of the ultrasound. He came back in the room a while later and told me I had a endometrial cyst which was the cause of all my symptoms. I was so relieved that someone was finally confirming it wasn't all in my head. He spoke with a gynaecologist and make an appointment for me. He also scheduled another ultrasound beforehand.

After discussing the situation with my gynaecologist it had been decided that a laparoscopy would be performed to remove the ovaries and clean up any endometriosis. I had the surgical at the end of June 2013. The surgery lasted over five hours and my husband was told I had stage 4 endometriosis and my insides were a mess. The gynaecologist had a general surgeon and a urologist assist with the surgery due to the extreme amount if endometriosis over my bowels, bladder, pelvis, etc.

Two days after surgery I was back to the ER because during the surgery two day prior my bowel had been perforated and I was sent by ambulance to the city hospital to undergo a bowel resection to save my life. I spent 10 days in the hospital and it took months to recover. In August 2013, two months after the two surgeries, I started experiencing endometriosis symptoms once again. I was sent for a CT scan and a ultrasound shortly after. During the ultrasound I was asked if I was sure they removed both ovaries. Off course I said yes or I was told it was. It was confirmed by my gyno that I had another cyst and when I asked her to confirm that both ovaries were removed she did.

When I first went into see my gynaecologist she told me the ultrasound showed I had a cyst on my ovary. Shocked I told get my understanding was both had been removed. She referred to the pathology report and said yes they had.

In February 2014 I underwent my third surgery in less then eight months to remove the cyst, clean up the adhesions and repair the terrible scar left from emergency bowel surgery. Now here I am not quite three months after my third surgery within the last year and once again I am in severe pain with it being hard to stand or walk for any length of time. I was sent for another ultrasound this week and once again was asked if I was sure my right ovary was removed!

Having seen the same tech a few times over the past year I was told that there is ovarian tissue remaining and I had another cyst almost twice the size of the last one. Now I'm not sure what step to take next. I just want my life back.

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May 02, 2015
Two Years After Radical Hysterectomy--Scared
by: Anonymous

Reading everyone's posts here brings me so much comfort. Two years ago, I had a radical hysterectomy after three laparoscopy surgeries to remove Stage 4 endometriosis. It was a devastating decision as I so wanted my own children and to experience the miracle of bringing my own child into the world.

I knew there was a chance the surgery wouldn't completely cure my endo but I prayed at least the pain would lessen and I would actually be able to walk again and not collapse from the severe pain of just even going to the bathroom.

Like other users here, I too had ovarian remnant syndrome. And went almost completely bankrupt from not being able to work and medical bills pouring in. Two years later, and on top of learning I have diverticulosis, I know the endometriosis is still here.

It is this burrowing pain under my left rib that radiates down my left leg and into my lower back. I can't even imagine having to go through another surgery. The cost alone...omg. Endometriosis specialists are few and far between. They don't usually accept health insurance either.

I'm angry, scared and not ok with the system as it is now in the States. I can't quit my job. I need the money to get out of debt from the past 3 years of my life. And if I don't work, I don't get paid, which means I can't actually take time off to even see a specialist and schedule another surgery.

I'm tired of this disease. I'm tired of being strong. I wish there was an answer. A solution for all us suffering.

Mar 12, 2015
I'm not glad anyone suffers but happy someone understands ♡
by: C.S.

I too have been tested by endometriosis for over a decade. Fortunately mine began at 26 after I had 2 boys. I refused a hysterectomy until I was 30 (I'm now 38) & kept 1 ovary for only a few short months after that due to monthly recurrence of rupturing chocolate cysts.

I have been suffering with many issues mentioned here for years; pelvic & lower back pain, migraines, fibromyalgia, etc....when will it end.

It saddens me greatly that more young women will also have to suffer such fates. I am honest & will tell, though embarrassing, surgical menopause essentially landed me in the looney bin.

If you don't have compassionate Dr's who work with your hormonal needs you can feel as if life is just too much, it's completely unnatural to wake up without female hormones in your 20's & 30's...This should be a no brainer.

I am going in for another laproscopy shortly as the pain has reached unbearable status once again. I wish everyone well & hope for understanding & help for those to come.

Feb 24, 2015
if the men were going thru all this hmmmm
by: hpkingston090

Yes ladies wait for it----------------THERE WOULD BE A DEFINITE RUSHED THRU FDA APPROVAL PILL FOR THIS HORRENDOUS DISEASE. SORRY FOR THE SHOUTING but we are your sisters, mothers, cousins, daughters, aunts, grandmothers,and great grandmothers. Once our health goes to hell in a handbasket---we will do our best to cope & like all the women before us we will persevere.

However at what mental-emotional-physical-financial PRICE? A little thought for the docs- start treating this horrific disease as an autoimmune disease therefore progressive treatments such as enbrel or humera could be used to help control inflammation. In some cases even a brief treatment of anabolic steroids.

Please start taking care of the ones that have been caring for others their whole life - your quality of life should not just contain two options.

I am so sorry that all of us women feel this disease. My love and blessings to all!

Oct 05, 2014
Never ending disease
by: Anonymous

After four surgeries I wish I could say things get better. I now have another cyst near my bowel and waiting to see a general surgeon. Looks like another surgery for me. On top of this I have continuous back pain and suffer from nausea and migraines. Along with the recurring pelvic pain.

Because of a complication during the second surgery I had a bowel resection which has caused a whole other spin on things. Wish I could give all you ladies hope but it doesn't get better once everything is removed. My suggestion is before starting with surgery to get relief from pain, see an endometriosis specialist because the pain will go away for a bit but it will continue to grow if there is any endometriosis left behind.

Seeing a specialist will help avoid numerous surgeries which will leave you dealing with pain from scar tissue caused by continuous surgeries.

Oct 04, 2014
Dazed and Confused
by: vceleste

It's good to know I'm not the only one in the world with this problem. I have had (3) rounds of Luperon, (2) surgeries and am now getting ready to have a partial Hysterectomy. The Lupron helps my symptoms but adds another million to the list. I felt best not taking the add back therapy, with them I was one crazy witch!

The only thing now is that I will most likely have osteoporosis. But the hot flashes, vaginal dryness, mood swings, etc... Are better then dealing with my period and constant pelvic pain. I guess it comes down to, what is the lesser of the evils?

I am fortunate , I have (2) kids and need to count my blessings. I am at the point that I want to stop putting poison in my body. I am 31 and am ready to take my life back! I want no more pain during sex, I want to not take hormones any longer that can cause Cancer in the future. I never work out & I eat like crap. I am changing my diet and working out. I am thin so I don't make these things a priority but I have read so much research on how our diet affects endomitriosis. Wish me luck ladies, I am really nervous about my hysterectomy.

Aug 02, 2014
You're not alone
by: Anonymous

I have stage IV endo and have endured five surgeries in less than five years, including a partial hysterectomy. A grueling six month treatment of lupron gave me just eight weeks of relief before pain returned and we had to explore more aggressive treatments again. My new meds make me intensely nauseous and I'm debating whether I can continue taking them given my quality of life. I've found some good pain relief with regular acupuncture but the nausea has been tough to manage. All this is to say, I feel your literal and metaphoric pain.

If there is the tiniest sliver of hope in my own journey it is that I really have learned to fully enjoy and take advantage of the moments, however brief, when I feel good. I don't hesitate to grab my son and head to the park or pile my family into the car for a quick trip since I know the good bout likely won't last. I hope you keep fighting for the answers to your health woes and wish you all the best.

Jun 27, 2014
Feeling down in the dumps.
by: Angie

I hear you, I am feeling pretty helpless as well. I had a partial hysterectomy two years ago. They left both of my ovaries and have not been doing well. I have had some good days and some really bad ones but never a normal day since my surgery.

I have been diagnosed with IBS about a year ago. The pain is getting worse I am bloated most of the time and in pain. I do not know what to do, I feel like a beach ball tossed between doctors. I think I would like to have my ovaries removed but my OB does not want to do the surgery. She is suggesting we try Lupron first. I almost rather have surgery. I am scared to try this medicine. God help us all since I feel no one really understands the pain.

Jun 10, 2014
Ottawa Resident Too
by: Anonymous

This is all terrifying to me as I am in Ottawa as well waiting for my first surgery which is to remove everything as I have Stage Four Endometriosis, everywhere with cysts and I have been eagerly waiting for my surgery to get my health back.

These stories while validating my own health issues make me wonder if I will just be undergoing the first of many surgeries and never feel better. I thank you though for your honesty and it does arm me with more information and specific questions for my surgeon and family doctor. Take care and hang in there.

May 01, 2014
I know your pain
by: Angelj

In two and a half weeks I will be having my 6th surgery for endometriosis. My last occurrence was so bad that all of my organs were stuck to my intestines when he went in to do the surgery. I I'll be 37 one week from today. I had my hysterectomy when I was 33.

I have one ovary left which they will be taking on May 23rd. This disease has effected my life horribly, physically, financially, intimately. I feel like this will never end. To say I'm tired or exhausted is an understatement...I have nothing left and no one will ever understand or ever help us.

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