The Agony of Endometriosis: When Menstrual Cramps Become Unbearable

By Gloria Siess

Life is too short and precious to be lived in constant pain.
Life is too short and precious to be lived in constant pain.
I lived in dread and fear of my monthly periods, knowing that disabling pain and horrific flows awaited me.
I lived in dread and fear of my monthly periods, knowing that disabling pain and horrific flows awaited me. | Source

This is a graphic account of a disease that is all too common....

Most women are wonderfully tolerant of their monthly menses. We become used to the pings ,pangs and ritual cramps. For me, the change came after I got married. While In my early twenties my once-normal flow turned into an alarming, burning mass of sheer agony. The feeling is difficult to describe. I felt like a hot towel was wrapped around my internal organs and trying to tear itself out. Taking an advil for such pain was really a joke; several times I felt giddy and lightheaded from the impact of my new monthly visitor. My flow increased , requiring three or four maxi-pads at a time. Dreadful-looking blue-black clots would spill out, as though a jar of Treacle Pudding had exploded inside me. Horrified, I went from gynecologists to gynecologists, desperate for help.

It took nearly five years for my condition to be properly diagnosed. I was told it was "nerves." I was given Codeine tablets for pain, and sent home with the grave advice to "Have a Baby. That will get rid of the cramps."While living in Houston, Texas, a wonderful Lady Doctor finally put her finger on the problem. She told me I had severe endometriosis and that I was probably infertile. Years later, when the pain and disabling flow prevented me from even bending over normally, I was given a complete hysterectomy.

My surgeon said the implants from the disease had caused so many complications, my Uterus was frozen with adhesions. My tubes, My ovaries, parts of my bladdar and colon, had also been affected by the disease. Five strange looking fibroids had grown on the ovaries and top of the uterus. There were clots and inflammation everywhere. I was, in short, a mess. After the surgery I was a "mess" dealing with menopause and HRT.but, blissfully saved from the torrental flow and frightful pain I had endured for so many years. For the first time in ten years I could go to work without fearing a spillage.

What IS Endometriosis? This is a strange disease where the lining of the uterus grows outside of the Uterus. It "implants" itself in the pelvic cavity, even traveling to the colon, bladdar, etc.--every case is slightly different.Instead of staying in the uterus, these pieces of tissue lodge where they do not belong, causing burning pain and internal scarring. The telltale signs are heavy flows, clots, and agonizing cramps. (The miscarriage I had was nothing compared to the pain of this disease). It tends to be misdiagnosed and sometimes ignored. Women are often told the pain is "emotional". Like many women with this disease, my flow would last nearly twelve days, pulling on my insides like an ill-tempered octopus. Most experts believe it is triggered by a hormonal imbalance. In our career-obsessed age, many believe delayed childbirth causes the body to go haywire.

To diagnose the disease, a Doctor will most likely preform a laparoscopy. (I had mine in Southampton, England, where I was living at the time). It is a quick surgical journey through your belly button with a scope that sees and records the landscape of the pelvic area. Once it is properly acknowledged, the patient has several options before getting to the sad condition I found myself in. Not everyone needs a hysterectomy.

Birth Control Pills (to which I was very senstive) help many, as the flow is lessened and the symptoms seem to relax their hold. It is not a cure, and neither is childbirth. (My sister developed endometriosis after having two beautiful children and ended up having the same surgery I did).Alternate hormone therapy is available. Progestin, A progestin intrauterine device (Mirena) danazol, and aromatase inhibitors are some of the options. Lasar surgery can reduce the number of tissue implants and reduce scarring.

The longer you have the symptoms, the harder it may be to become pregnant. Some women with Endometriosis simply can never conceive as the egg cannot implant itself properly.The more severe cases rule out having babies entirely; mild cases do not. My case was very serious as the adhesions (scar tissue) had connected parts of my pelvic area and bowel together.

Ignoring symptoms and becoming overly stoic about severe menstrual pain can backfire--always ask for a laparoscopy if you feel your pain is abnormal. My symptoms were under assessed and too easily dismissed. By the time the true problem was discovered, I found myself infertile and headed for major surgery. Never let a Doctor dismiss your pain lightly; always listen to your gut--literally.

Note: In 1990, the Endometriosis Society found a link between the rayon used in sanitary pads and tampons and the onset of the disease. 79% of monkeys exposed to dioxins from rayon fibers developed endometriosis. It has to do with the way the chemical breaks down during the bleaching processes.

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Comments 30 comments

geegee77 profile image

geegee77 5 years ago from The Lone Star State!!

I have to say I know exactly what you went through, but my case was kind of different because when I was younger before I got married my menses were fairly normal every month right on time. I developed endometriosis after I delivered 3 healthy boys and after I had my tubes tied right after my last son was born. Omg the pain was unbearable my doctor performed what was called a endometrial ablation which kind of burned the area around my uterus. He told me this procedure would help with my period or in some cases he said it stopped it completley. He also said it could come back, and boy it did come back with a vengence I would bleed so much I couldn't even stand for too long because it would just come out. My final resort was a hysterectomy which I had in 2001 I was 35, in a lot of ways its great, but it also came with me gaining over 50 lbs since my surgery. Im trying so hard to lose it but now at 45 it's no so easy. Sorry this was so long your hub was very interesting and im sorry the way yours turned out really I am. Voted up and useful, take care:) ge


GarnetBird profile image

GarnetBird 5 years ago from Northern California Author

Thank you Geegee! wow, you've been through it. I know what you mean about weight gain after hysterectomy. I have found that taking time released DHEA (25)=mg) in the morning has helped my energy and my weight. Now I have type 2 diabetes and thyroid disease. Luckily, I am responding to medications and no longer sit around in a Fog of stupor. haha/enjoyed your comment-thank you!


MilanR profile image

MilanR 5 years ago from CANADA

Im so happy to have read this article when I been and still (so) frustrated about this. Besides... I don't think or remember really searching to find answers online, since I thought talking to my doctor was enough?

It just happened that lately I been working on my personnal health issues as a real priority and am really interested into knowing and making sure whatever treatment I get is the right ones.

I can't believe how confusing real issues like this one can be. When nobody understands and thinks you're being too dramatic or whiny, you're actually bearing with more pain than most ppl(women) out there.

Contrary to the the comments above, I've always suffered from abnormal pms pain since the very first time I got my periods. Once very young I even got hospitalized cause of agonic cries ; I was totally unable to unbend and stand back up. My mother since put me on birth control. I believe I was around 14 years old at the time(if not younger). My mom dealt with the same problem and got operated for hysterectomy after having me and my brother. After 10 years, I stopped taking the pill not even remembering why I started taking it. True enough after one year the evil pain stroke back.

After almost 5 years I still go through that evil pain and refuse to go on birth control. Personnal choice. But i do live hell every month and it does affect my everyday living and mostly my work. I miss a lot of work days that I can't afford and if I don't I binge on Advils or harder drugs if I can get to make it there and ending sicker.

I want kids someday. Anyways that's the hope. If I knew already I wouldn't hesitate a second to get that oparetaion. I talked to my doctor many times but she doesn't seem to take me seriously. What should I tell her to make her understand that I'm really in pain?

I'm really strong and have'nt had the easiest life but your article is proving I'm not alone and giving me hope that maybe I can finally get help to make it easier through those days.

Thanks for everything ox

Milan


GarnetBird profile image

GarnetBird 5 years ago from Northern California Author

Ask your doctor for an exploratory surgerical procedure called a laparoscope..I had mine in the UK and it showed dense deposits of tissue in places where no menstrual tissue should normally be found. You probably can have children (some have) but I am not a doctor or expert. Good luck, thanks for reading--email me if you need more support on this issue at Garnetgem707@hotmail.com. Hang in there!! Don't let them dismiss your pain and symptoms..


aviatorgirl 4 years ago

I want to know if I have Endometriosis. I am 15 years old and I first started menstruating when I was 12. When I was 14, I started getting really bad pain. It would happen only on the first day and last for about 5 hours straight. It wasn't much of cramps, but mostly a lower back pain that was associated with nausea and frequent trips to the bathroom with diarrhea. I get a normal flow and my period lasts for 6 days. Please help!!!


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

Thank you for reading and commenting--you are rather young to have it, but this is something your doctor should look into carefully. severe pelvic pain is NOT normal, no matter how much they tell you it is..if it persists I would ask for a laporoscope or ultra sound, etc.--that is how mine finally got diagnosed.

Taking calcium pills before and during might help, but this is a matter for your doctor to discuss. Best of luck and let me know how this goes!!


Jennifer 4 years ago

What is the pain of endometriosis like? I have severe pain before and during my periods and this pain is more like burning and throbbing. Its nothing like normal cramps. This has been going on since 10 years now. None of the medicines bring relief. I have seen various gynecologists but they always tell me its a 'normal' pain and will disappear once I have children. I asked for laparascopy to find out if I have endometriosis but they do not want to do it either. I have no idea what to do and how to make this pain more tolerable.


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

I would insist on one--burning tearing pain that feels abnormal is the hallmark of what I personally had. I suffered with it for 12 years before they gave me a total hysterectomy..by then it had spread to my pelvic organs and even parts of my bowels. I sincerely hope you can find a Doctor you will listen!My sister had 2 children and still developed the disease and needed surgery. Hugs to you, Garnetbird


Jan 4 years ago

It has now been almost four years i was suffering from mild to moderate pains during my cycle. In August of 2009 my pains got worst. I visited my Doctor and was diagnose with endometreosis. I am now awaiting an appointment for Cleveland clinic to arrange for a surgery. i have been given many prescription drugs for pains. these would only releive it for an hour or two, but it returns.these pains do disrupt my entire life when it is time. the information share on this page has been useful to me. After my surgery i shall share my experience.


Tara 4 years ago

I have agonizing periods with heavy flow & clots(huge ones). It got worse after the birth of my daughter. For about 3 yrs I saw doctor after doctor, they mostly treated me like a crazy person looking for drugs, or a hypochondriac. Finally I was referred to a specialist and he performed a laproscopy. This first thing he told me was that I was not crazy! He removed scar tissue and I was put on birth control and told not to take the inactive pills so that I wouldn't have a period. Things were fine while on the pill, but I've since had to get off the pill due to not having insurance or enough money to see a doc. It's bad again and I'm really worried permanent damage could happen because I want another child someday & I'm only 29.


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

Wow..your story sounds a lot like mine. I really feel for you. Thank you for sharing and please keep me updated. This is a terribly disabling disease and the public needs to be more aware of it.


sarahkat 4 years ago

I'm 35 years old, and had a full hysterectomy 2 years ago due to severe endometriosis. On a low does hrt 2mg eleste solo, it's been a bit tough coping with my body shape changing, you definitely thicken around your middle! I eat less and exercise more now than ever before but have gone up a dress size. Over the last 2 weeks had really bad cramps like period cramps is it just due to scar tissue?? other than that my life has changed for the better, don't have to work everything around my periods! and just embarking on a new exciting career.


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

So happy things got better for you! No one should have to live in pain with this disease..


Nikki 4 years ago

I'm almost 22 and for the past 2 or 3 years my pain has gotten progressively worse. I had an ultrasound about a month ago which was normal except for a very small ovarian cyst. I have seen 2 doctors since then and both have shrugged off my pain like it is nothing. The pain is so severe that I can not even stand up straight. I often vomit or feel lightheaded because it is so intense. I miss school and work every month because I can not stand to sit up straight in a chair. I also have a lot of pain while trying to urinate. I can't even empty my bladder completely it seems because the pain is so bad. My period is very heavy and I have dark red clots too. I have made another appointment with yet another doctor hoping to get to the bottom of this. It's very frustrating that no one takes my pain seriously.


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

ASK for an exploratory surgery called a laparoscope through your belly button. I had mine done in the UK and it really shed some light on the agony. I feel for you as I went through this for over 10 years..keep me posted, Okay?


Nikki 4 years ago

Thanks! After ending up in the ER the other night I am finally having laparoscopic surgery tomorrow. I saw my doctor today and he said he suspects endo because of the severity of my pain. I had another ultrasound and cat scan in the ER and now have numerous cysts. He said he will remove the bigger ones but he can't remove them all

because there is so many. I'll keep you posted after tomorrow!


Nikki 4 years ago

Hello! I had the diaganostic laparoscopy today, my doctor told my mom in the waiting room that he was very surprised at the extent of disease. He didn't expect it to be as bad as it was. I have three incisions and he removed a few chocolate cysts. I go back in two weeks to discuss everything with him. I'm glad to finally have answers!


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

Thank you Nikki for letting me know. I had advanced stages also and ended up with a total hysterectomy. I am so happy that you have been diagnosed..keep me posted on what the treatment plan is..


Laura 4 years ago

Just read through your post & all the comments. I'm 18 and started my period when I was just 9 years old. I do not ever recall having a "normal" period, ever. From two days before my period actually starts, right to the end of my period (usually 12-14 days) I have excrushiating pain. I use a box of 18 tampons & 2 packets of maxi pads in 2-3 days. For the first time after reading this I feel iv found the answer. I can't even remember the amount of times iv been to my doctor and the names of every different contriception pills I've been "tried" on. Not mentioning 3 different pills that usually stop periods altogether, but oh, not me. My period takes over my life, my work, my family, my friends. I'm close to loosing my job because they just don't understand. Not many people do. My doctor refuses to send me to a gynaecologist until I tried the coil. I really really dnt want to have this done as my mum had it and her body rejected it ripping her insides! I have tried to get my pain through to doctors explaining how it's NOT normal for an 18 year old to loose so much blood and be in pain bad enough to end up in a&e . Finially I have got through, my doctor has agreed today to refer me and I'm waiting for paper work. I hope I find the answer before it's too late. I know there's something wrong, I just know. Thank you for your post atleast now I know it can be found & sorted. Laura xx p.s, sorry this post is so big!! Plz read x


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

Ask for a laparoscope to see what is going on..it's very simple surgery and it helps diagnose the implants (if you have any) This sounds like way too much for anyone your age to bear.I went to several Doctors until a female Dr. in Houston put her finger on the problem. Keep me posted!


Laura 4 years ago

Thanks for the reply. It's good to be able to talk about it with someone who understands. I hope so much that what ever it is gets sorted as it's taking over my life. I have missed out on so much with my friends through being in too much agony to even speak on the phone! I don't abuse my body I don't drink or smoke, (not offending anybody who does) I'm a healthy weight and eat a balanced diet and this is what I get in return! I suffered from a misscaraige last year but I know this hasn't caused it as my periods have been this way since the word go. Sorry to blab on, u know how I feel! X


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

Feel free to stay in touch. My marriage fell apart largely due to the diminished state of my health and nerves due to this disease. I felt too drained to really be as strong as I needed to be. I had to wear attends undergarments for kotex pads on my worst days just to stem the flow. Please follow through and get your pelvic area assessed as it can worsen if left untreated..thank you so much for reading this.


Nikki 4 years ago

Have you had any experience with lupron? I saw my doctor yesterday and he showed me pictures from my surgery. My left ovary and tube are completely destroyed and non-functional. My bowel and bladder are covers in endo. And my right tube was stuck to my abdominal wall. He staged it at stage 3. I asked if I would benefit from having the left ovary and tube removed and he says yes, but wants me to try lupron first. I have been researching it online and haven't read hardly any positive things about it. I have another appointment next week but I'm really leaning towards not taking it. It seems like the side effects are far worse then the possible treatment outcomes. :/


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

I am sorry but when I was diagnosed this drug was not available--they tried me on birth control pills (I got migraines) and finally surgery. I,. too, had a lot of adhesions and damage internally, including my bowels and ovaries, etc./I am so glad you've been diagnosed. Could you suggest surgery, or is your Doctor resistant to this due to your age? I am so sorry that you are going through this..keep me posted!!


Nikki 4 years ago

After reading everything I've read about lupron I am absolutely terrified to take it. I'm going to ask what my other options are. Birth control pills give me migraines also, so that is probably out of the question. He did say that if the lupron did not work he would do another surgery to remove the left ovary and tube and any new cysts or endo. Maybe I can convince him to just do that. At this point I think I'd rather do anything instead of the lupron.


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

Yes, surgery might be far far better!! I almost died from an adverse reaction to Zetia/so glad you have some options. Let me know how this turns out and God Bless!


taylor 4 years ago

Hi i have really bad period pains on the first day which last for four hours. The symptoms which i have are vomiting, dizziness, shivering and cold sweats. The pain has become so unbearable that i miss school once a month. I really want to know what's happening.


GarnetBird profile image

GarnetBird 4 years ago from Northern California Author

Promise me you will ask for a laparoscope if this goes on..it is important to catch it in time. It is very minor surgery, done through the belly button with a probe. Keep me posted and thank you for commenting!


Megan17 3 years ago

Hi I just want to know if it is possible that I have endometriosis. I'm 17 years old and my cramps hurt so much, they feel like someone's ripping out my stomach. I first got my period when I was 12 and they usually are very heavy and last longer than 7 days. I have just recently started feeling this bad of cramps about a year ago. My mom has endometriosis and I was wondering if I could have it this young


GarnetBird profile image

GarnetBird 3 years ago from Northern California Author

Please see a sympathetic GYN and get a 2nd opinion. I was ignored for years and it got worse and worse. Laparoscope surgery is simple and you'll get out the same day. I do not know what age the onset usually is, but I was 19. Take care and keep me posted!!

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