pelvic inflammatory disease Archives

Is it Endometriosis or Something Else?

Published on February 10, 2013

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Endometriosis is an often misunderstood disorder affecting an estimated 176 million women and adolescents around the world, during what should be the “prime years of their lives” (Hummelshoj). Commonly characterized by symptoms that may be so severe as to interrupt one’s daily routine, whether with periods or at any time during the month, endometriosis accounts for the leading cause of pelvic pain in women of all ages.

Girls and women who suffer primarily during menses only may think, “Of course everyone’s periods are super painful – that’s how it’s supposed to be, right?” This is actually incorrect. Endometriosis is among the most common of diagnoses in adolescents and women with pelvic pain. Unfortunately, due to widespread lack of awareness and disease education, early symptoms are often dismissed as pelvic inflammatory disease or infection, ovarian cysts, appendicitis, IBS, Interstitial Cystitis, “normal” pain, or worse, an “in your head” diagnosis. This contributes to a near-decade delay in proper diagnosis and intervention. The good news is, accurate diagnoses are increasing as doctors and patients alike become better at recognizing the signs of endometriosis, particularly in younger women and girls. Early intervention combining timely diagnosis with proper treatment is essential towards preventing symptom progression and development of infertility (Sanfilippo et al.).

Though many women and girls may experience some discomfort during menstruation, “killer cramps” are NOT normal – despite what the media, friends and even well-intentioned loved ones may tell us. Pain is the body’s way of saying something is wrong. Symptoms that get in the way of school, work, sports, extracurricular or social life are an indication something is awry, as are persistent symptoms at any time of the month.

So What’s Normal?

minor period discomfort that may even require over the counter medication
occasional irregular or absent periods, particularly if athletic
“functional” ovarian cysts
pain during ovulation

What’s Not Normal?

severe and incapacitating period pain or pelvic pain at any time of the cycle that interrupts normal routine
GI discomfort, often but not necessarily around the time of menstruation
bladder pain or discomfort, during your period or apart from menses
chronic heavy bleeding and long cycles
if active, pain with sexual activity (especially upon penetration)
“chocolate” cysts known as “endometriomas”
subsequent allergies, food insensitivities or intolerances, chemical sensitivities, fatigue, or autoimmune conditions like thyroid disease may also be present in some women and girls with the disease

Time to See a Doctor

Any ongoing, worsening pain that has no obvious explanation should be evaluated further. “The younger the patient, the more valuable the early evaluation.” (Robert B. Albee, Jr., MD).

Sound Familiar?

you have pelvic pain during your period or at any time of the month that causes you to miss school, work or activities
you experience chronic stomach upset such as nausea, diarrhea or constipation
you have painful urination in absence of infection
if sexually active, intercourse or sexual activity are painful
you have family members who have been surgically diagnosed with endometriosis

If you’ve answered yes to any of the above, talk to a trusted nurse or doctor about endometriosis.

Endometriosis is NOT…

An infection or sexually transmitted disease (“STD”)
Contagious or preventable
Caused by abortion
Caused by backflow periods and thus cured by hysterectomy
Untreatable!

You cannot “catch” endometriosis, and it isn’t an infection of any sort. You can’t “give” it to anyone else, and there is no absolute prevention. There are treatments that can help, however; and many women and girls live quite well in spite of the disease and are able to control their symptoms long-term through different options. The cornerstone of any effective treatment regimen is quality surgery; most notably, Laparoendoscopic Excision (LAPEX).

Being aware of signs of endometriosis can help get early diagnosis and treatment – critical to effective management. Pain – menstrual or otherwise – that interrupts one’s life is never normal – being aware of abdominopelvic pain, GI and/or urinary distress, and/or pain with sexual activity are significant indicators of endometriosis. The most important step a young woman can take is not trivializing her body’s signals. Pain is a sign that something isn’t right.

Societal taboos and a culture of menstrual misinformation may lead women and girls to think their pain is “in their head”, or they may even be told by others that they are “faking it” to get out of work or class – or that crippling period cramps are “totally normal” and “part of being a female”, but these outdated notions simply aren’t true. If you are experiencing pain or symptoms that get in the way of your life, see your doctor.

About the Authors: The Center for Endometriosis Care is a COEMIG-Designated Center of Excellence in Minimally Invasive Gynecologic Surgery which was founded over two decades ago by renowned laparoscopic excision (LAPEX) pioneer Robert B. Albee, Jr., MD, FACOG, ACGE. The Center is run under the leadership of Medical Director Ken R. Sinervo, MD, FRCSC, ACGE along with a caring, compassionate staff. We continue our efforts as architects of the legacy in gold standard endometriosis care.

Medical Disclaimer: All material on this web site is provided for your information only and may not be construed as, nor should it be a substitute for, professional medical advice. To read more about our health policy see Terms of Use.

Hysterectomy or Not – Angela’s Endometriosis Update

by Angela Wice

Published on January 31, 2013

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Well the time has come and I will be undergoing my second surgery for Endometriosis and PID damage February 28^th – a hysterectomy.

My health has been alright, all things considering. My husband and I haven’t been intimate for a while as it’s extremely painful to have sex and the medication I am currently on (Cymbalta) has lowered my sex drive almost to nothing. If we do have sex it takes extremely long to orgasm and sometimes I just can’t at all. That is very frustrating.

I haven’t had too much pain lately in my pelvic area and that is making me nervous. It makes me think that I should hold off on the surgery. However my bladder and bowels are bad and I need that looked at for sure. I feel a lot of scar tissue up near my liver and diaphragm where the endometriosis was before, so I am pretty sure the scar tissue is just all over the place.

The surgeon is making me extremely nervous. Her last words to me were “I am going to take your tubes and your left ovary, if there are complications I will open you up and take it all out.” When she said that, I just sat there. I couldn’t get any words out. I have asked for a hysterectomy so many times before, but have been refused. Now I am not prepared if she does one. I am more confused than ever.

I have researched hysterectomies and endometriosis for five years. I told myself that when I turned 35, if my endometriosis and all of the other issues were still here, I would have a hysterectomy. Well, I am 36 in June and no matter how much I have researched having a hysterectomy, I am still on the fence. Should I have a hysterectomy or not? There are so many complications and I wonder if a majority of my endometriosis is on my bladder and bowels what good would the hysterectomy do?

I had high grade cells removed from my cervix last year. Were these endometriosis lesions? Has anyone ever heard of this? All in all, I want my uterus and cervix out. I am not planning on having another baby and at this point it is safe to say I am infertile due to the shape of my uterus and the damage done to my tubes from PID.

I get depressed thinking about how long it will be for me to go into menopause naturally and what if that doesn’t even help then? Yes, at 36 I want to go into menopause. I want the pain to stop.

This disease is terrible. I wonder what would have happened if they caught it when I first started to have symptoms. Would I have this many complications? Would I have the excessive damage of the deep infiltrating endometriosis that they removed with my last surgery? Would I have the nerve damage that I have now? Would my bowels and bladder be in better condition? There are so many questions, but I will never have the answers to them.

I think that if my bowel and bladder symptoms were not as bad, I wouldn’t be in so much pain. I wonder if the excision surgery removed all the endo and if the pain I have is from endometriosis or something else. I will soon find out. I think there is huge damage from the PID along with massive scar tissue that has obstructed or intertwined with my bowels, ureter and bladder. As for now, I can only sit and wait to see what happens. I go for my pre-op on February 20^th so I can ask more questions then.

What do you guys think? What would you do if you were in my shoes? Hysterectomy or not?

Pelvic Inflammatory Disease Post Endometriosis Surgery

by Angela Wice

Published on November 15, 2012

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Part three of my twenty-five year battle with endometriosis.

I went to a walk-in clinic to get a pap done for the bleeding that was happening during and after sexual intercourse. While waiting for the results during the week I was on the floor doubled over in the most intense pain I have ever felt in my entire life. I went to my general practitioner; I was white, slight fever and delirious. I was in so much pain. I told her I had a pap done, but the results were not back yet. I was told to call the walk-in for the results but they weren’t back in so they had to call the lab. In the end, I was told I had Pelvic Inflammatory Disease (PID).

None of it really sunk in right away because I was in so much pain I thought I was going to die. I was given an antibiotic but I was in so much pain I threw up the medication in the parking lot, picked it back up and put it back again. I was delirious, I couldn’t think straight and I really have no idea how I got home that day. All I knew was I was in pain. I got a phone call from the pharmacy three days later telling me that they had given me the wrong dosage and it should have been 3x what I was given; that explained why the pain never went away. The disease was pretty much wreaking havoc on all of my insides, everything that was fixed with my endometriosis surgery. I was devastated.

Years later, I realized that my doctor made the wrong choice in medicating me as she should have sent me straight to the hospital to put me on an IV drip because there were abscesses that burst and were now covering all of my insides. From the day of diagnoses of the PID, the pains never really left. I started to have problems having bowel movements, which I hadn’t had since before the surgery. I just couldn’t go and I felt that my bowel was twisted somehow so I went back to my surgeon. He looked at me like I was making up my pain and that there is no way I should have pain and should go home. I was so angry.

About 6 months later, I ended up in the ER for excruciating pain on my left side near my ovaries. At this time I swore it had to be my bowels but it wasn’t My tube was enlarged and there was blood inside and all around it. They had no answers for me, just sent me home. I researched it. Either it would be tubular cancer, PID remnants or endometriosis in the tube. I knew it wasn’t cancer; it has to be either the PID, that was not treated properly almost 3 yrs later, or endometriosis.

During this time my pap came back with mild dysplasia twice so I was sent to my gynecologist to have a colposcopy. The test showed high grade lesions with no HPV. The pains persisted during sexual intercourse and so did the bleeding.

At the beginning of 2012, I went back to my surgeon again as pain during sex as well as bowel movements and urinary pain and he said there was fluid in the cul-de-sac and if it was endometriosis, a prescription of Lupron would resolve the issues. I went back three months later. I was too afraid to have sex during that time, but it made no difference, the doctor it isn’t endometriosis. “You have Neuropathic Pain Syndrome,” I was told. At that point I could have put my hands around his throat and strangled him. This surgeon had the worst bedside manner ever. He knew I was going to the Wasser Pain Management Clinic in Toronto and said that if the gynecologist there (he had trained her) agreed to the surgery he would do it. However, I already decided that I was never going back to him because every time I left his office, I cried for hours.

In July 2012, my gynecologist at Wasser agreed to do another surgery since I had only had one. She put me on various medications such as Gabapentin, Amitriptyline and Visanne. During this time I was calling her office to actually book the surgery and I didn’t get a hold of her for months later. Finally, on November 6^th 2012, I made an appointment to book my surgery for this year or the beginning of next year.

To bring you up to date my husband and I got married in August 2012 at city hall and are going to Dominican for a symbolic ceremony. My dream is to be able to finally have sex with no pain with someone I truly want to spend the rest of my life with.

Until my surgery I continue to take the Marvelon and do weekly if not twice a week enemas as I can no longer have a bowel movement. I hope that whatever damage was done, any endometriosis that is there and any scar tissue that is obstructing my bowels, will be removed so I can carry on with the next chapter of my life.

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