Finally a Diagnosis {Endometriosis: A Series}

by Mama Queenly on August 4, 2013

I got my first period when I was nine years old. I had no idea what was happening to me because no one had explained menstrual cycles to me yet. But why would they?? I was nine, for Pete’s sake!! I had to have my period explained to me by the school nurse because it started in the middle of class; I got blood on my chair and the kids talked about it for months. I was so distraught over what was happening because I legitimately thought that I was dying.

Me at age nine

By the time I was fourteen my cycles had doubled in frequency and intensity. I would have such heavy, painful periods that I would have to stay home from school for the first day or two. I had a doctor’s note in my school file that was laminated because that had become standard for me. I would lose so much blood that I would pass out and the pain often made me vomit the whole first day.

My mother started taking me to the gynecologist when I was fourteen because she didn’t know what else to do and our family doctor wasn’t qualified enough to handle the issue. At fourteen I had my first pap smear which was scary, awkward, and painful.

Over the next few years we would get several “educated guesses” as to why my cycles were so horrendous; they ranged from plausible to preposterous. One doctor told my mother that I was actually twins at one point, but that I had absorbed my twin. I had to have my kidneys checked to make sure I only had one set and doctors warned me that I might expel teeth and nails from my body when I was older. The longest running one being that I had a very real condition known as uterine didelphys (as shown in graphic below, diagram A), which is when a woman has more than one uterus and cervix. Can you imagine hearing news like that when you’re only 14 years old? I thought I was a massive freak. I remember explaining it to my first boyfriend and examining his face for judgment.

udidelphys

That was the diagnosis I believed for close to six years. I believed that I would never have children and also that if I were to maintain a pregnancy to full term that one or both of us would die. I had originally wanted to have six children and had names picked out for all of them, of course. I come from a family of six and my mother had made it look so easy. Hearing that I would never be able to become a mother on my own was heart breaking!

me-18

When I was 19, a reproductive specialist who was performing a cervical leep on me for cancer cells confirmed that I indeed only had one uterus and cervix, respectively. He mentioned to me then that I might have endometriosis, but that he would have to look inside of me to make an actual diagnosis and because of my age he preferred to “wait and see” instead of performing a laparoscopy.

He also told me that if I should ever get pregnant that there was a large possibility that my cervix would no longer be strong enough to support the pregnancy and that I could be at risk for pre-term labor. He gave me a 30/70 ratio of survival for any potential pregnancies. I took a break from school and moved home because I couldn’t handle all of the stress.

handstied

Fast forward through two healthy pregnancies and thirteen years later I found myself dealing with ovarian cysts and fibroids and having to have a laparoscopy to find out what exactly was going on. The cysts and fibroids were causing unbelievable amounts of pain! I didn’t know what was happening! Some days I would be fine and then suddenly I would not be able to even stand up without doubling over from the intense, stabbing pain. The cysts would cause very heavy bleeding too (usually if they happened to burst) and it was very scary; I would bleed so much all at once that I feared I was hemorrhaging. Finally a doctor confirmed what other doctors had suspected in the past; that I did in fact have endometriosis.

Endometriosis is not uncommon, but has varying effects depending on the woman. It is when the uterine tissue grows in other areas of the body outside of the uterus and most times causes abnormal bleeding, pain, and can sometimes cause fertility issues.

endo4

The most common complaint from sufferers is pain, which can come in varying degrees and at different times, not specifically during their menstrual cycle. Some may experience pain during a bowel movement, while others might experience it during or immediately following intercourse.

For me, I have a large build up of tissue behind my uterus so when my cycle is coming I will get severe lower back pain that is freakily reminiscent of back labor. It was always difficult growing up with cycles as severe as mine because I have had to opt out of a lot of activities. I would have to miss out on things because the pain and bleeding were so debilitating and I was often criticized for overreacting over “just having your period.”

Other girls could never really relate to me because their cycles were not affecting their quality of life; they couldn’t understand the severity of what I was experiencing because their cramps didn’t make them vomit for hours, they didn’t need prescription pain killers to function, and they could wear tampons with confidence and not soak through a tampon and overnight pad after just a few hours. (Yes, I would wear them together to make the pad last just a little bit longer. It was the only way I could get through the school day.)

Even when I’m not dealing with a cyst and I don’t have my period, I have constant abdominal pain from the tissue build up from past cycles. I have so much blood loss during my cycles that it usually takes me about a week or so to start feeling better after my cycle has ended. Now that I have two boys under the age of five, it is increasingly important that I can function normally on a day-to-day basis.

endometriosis-1

Over the past year and a half I have had to rely heavily on friends and family to help care for my boys when I am ill so that their father can go to work without worrying about what might happen while he’s away. But people aren’t always available and we both worry about me passing out from blood loss and possibly traumatizing my oldest. A boy who is old enough to understand that something is seriously wrong with me and has asked more than once if I’m “going to die” and if I “will be with him forever”; questions so much bigger than I’d prefer him to worry about at four years old.

I recently sent in all of my medical records and applied for an appointment with the University of Michigan’s Endometriosis Center and Pelvic Pain Clinic and am looking forward to finally getting some answers! While I was filling out their exceptionally thorough application, it was amazing how relevant their questions were to me!

questionnairecollage

On the form they asked about my mood, my sleep habits, and my energy level; there are so many different ways to answer questions about pain level and frequency, as if they understood that it is varied dependent on the patient. Their packet was full of questions that no one has ever really touched on before; it gave me a glimmer of hope about my situation that I haven’t felt in years.

I invite all of you to join me on my journey to the University of Michigan to find these answers. I plan to journal about my experience in hopes that some of our blog readers may also feel that glimmer of hope and that they won’t feel like the only person going through their unbearable “just a period” cycles anymore! Be on the lookout for a post about my first appointment!

Further reading:

Share/Bookmark

{ 25 comments… read them below or add one }

NJ August 5, 2013 at 10:01 am

Thank you for bringing us along on this journey. After struggling with infertility for a year, I was diagnosed with mild endo through an HSG (Hysterosalpingogram), which was extremely painful, but informative. I look forward to the (hopefully many) progressions doctors will make in this veiled and poorly understood medical problem!
Happy to hear you were able to have children – I am 20 weeks along with my first!
Prayers your way!

Reply

Jessica B August 5, 2013 at 5:44 pm

I too have endometriosis and have battled lost pregnancies, pain, heavy periods, irregular cycles, cysts, and a myriad of other symptoms. I also started my cycles young (8!) and missed school for a few days every month. I just received this diagnosis after years of worry and problems. I was told after my miscarriages that “it must be genetic” and “you will never carry a baby to viability”. But after 5 children and 5+ years of breastfeeding (which kept it at bay) it came back with vengeance. I look forward to hearing your answers and maybe finding some hope for a long term solution to a diagnosis that I was told meant a lifetime (or at least until menopause) of pain.

Reply

Sarah August 5, 2013 at 5:52 pm

I have thankfully never dealt with this, but my mom had it. I can remember her sitting on the couch with her heating pad, hoping the heat would help. In all, she had about 5 surgeries because the doctors thought that if they removed tissue, she would get better. She ended up having a complete hysterectomy in her late 20s. The things she went through after the hysterectomy were so much harder on our family than before, oddly enough. She fleet better physically, but the toll it took on her body at such a young age was immense. I hope they find a better solution for you!

Reply

brooke August 5, 2013 at 6:06 pm

Please go see a Chiropractor. The body heals itself, from the inside out. Surgery helps greatly, but is risky and should be a last resort. Your body defied the doctors knowledge of what you can and cant do, you had babies despite everything you were told! Your body is a miracle!

Reply

Mrs. BWF August 6, 2013 at 12:19 am

The author of this post has and does see a chiropractor.

Reply

Alisan August 5, 2013 at 6:07 pm

Thank you for this. My mother suffers from this condition. Because it’s hereditary I worry for myself and my two girls. I need to get as educated as I can NOW. I have forwarded this on to her and maybe she can find some help from the University of Michigan!

Reply

Chanel August 5, 2013 at 7:44 pm

Thank you so much for sharing your story. As a doula with endometriosis, I also run an endo support network online, and there is so much overlap (and miseducation in the medical community!) when it comes to endometriosis and pregnancy — we’re infused with enough anxiety when we get pregnant, but add in all the endo troubles and the world is much more complicated. I wish you great success at Michigan! Please keep us posted. I have considered applying for the one at UNC even though I am in Florida; after three laps, D&Cs, and an oophorectomy, I have found nobody willing to or supportive of further, intense treatment of endo in my area. I do wonder why there was a hesitation to do a lap when you were 19; my first lap to diagnose endo was done at 19, between my freshman and sophomore years at college. There is a very strong family history for me, and with the exceptionally heavy cycles and constant pain and narcotics, they needed to confirm it so I could be “official” and go forward with other types of endo treatment. Much love, Chanel

Reply

Ali d August 5, 2013 at 8:09 pm

I’m a fellow endo sufferer. This may sound far out, but humor me :) Have you seen a naturopath for muscle testing? Mine fuh-reaked me out to the max when she mentioned that sometimes abdominal parasites present the same as endo! Turns out I don’t have one but apparently gynos commonly misdiagnose even with laparoscopy. She did find that i was super low in zinc, which was screwing with my pituitary and hormone production. Also, Mayan massage is a major help with pain. It puts the uterus in proper position. I too had back labor, and my cycle pain is pretty much similar to contractions plus feeling like someone is stabbing my colon with a knife…fun times. My Gyno told me I wasn’t ovulating and would never get pregnant. I have a healthy daughter now and practice ‘fertility awareness method’. It’s a version of Natural Family Planning and I use it less for birth control but more to better understand my body. The book ‘Taking Control of Your Fertility’ is life changing!!!! It puts things into perspective so you can plan around specific parts of your cycle, and know the ‘whys’. Good luck with your searching and if you’re comfortable, I highly recommend trying the natural route to find the cause vs masking symptoms.
-another Michigander <3

Reply

Jessica August 5, 2013 at 8:57 pm

If it’s appropriate- I would love to get in contact with the writer of this post- In my research studies and continuing education as a NYS Licensed Massage Therapist (as well as Traditional Chinese Medicine apprentice & all around alternative medicine buff) most of my studies have been gynecological. My most in depth research has been for endometriosis treatments & my thesis was how I would treat a patient with it from a comprehensive Western & Eastern medicine point of view. If you have not been introduced to Mayan Abdominal Massage, castor oil heat wraps, and all things Spleen/Earth related (Chinese medicine), please look! And if you’re willing, I’d love to send all the information & references I came across when in research phase. I only have empathy to share & wish you the very best in understanding everything your body does for you & finding what works best for you to continue being an amazing mom to those boys!
Much love

Reply

Shawna August 7, 2013 at 6:29 pm

I would love the information that you have. I had a hysterectomy at 29 {thankfully after 3 healthy children}, and now, it seems my 20 year old daughter is following my ~not so lucky~ gyno footsteps.
I have begun researching alternative therapies for her, hoping and praying that she will not have to suffer like I did….
How do I get my contact information to you?

Reply

Leah August 10, 2013 at 8:31 pm

I would also love the information. My 12 year old daughter is following in my footsteps and watching her start to experience what I have is even worse than going through it myself!

Reply

EQ'sMama August 5, 2013 at 9:34 pm

A lot of this I could have written – periods at 9, debilitating pain causing absences from school and later work, pairing the tampon and night pad and soaking through them quickly (I used to set my alarm to go off every hour during the night). I was lucky enough to have competent Drs who diagnosed endometriosis relatively early and confirmed it in a laproscopy at age 16 during which I lost one of my fallopian tubes.

I was told I would never conceive without IVF assistance if I conceived at all so I was stunned and overjoyed when I became accidentally pregnant and had a beautiful healthy baby last year.

I am now breastfeeding my young baby and though my periods came back very early they have been what a ‘normal’ person would call severe but what I call mild. I have been warned that especially when I stop breastfeeding its likely my endometriosis will flare up and my symptoms will revert to their former severity so I will be watching your progress with interest.

Good luck!

Reply

Neptune August 5, 2013 at 10:06 pm

Thank you so much for sharing your story. It is comforting to know there are other people out there going through the same thing. I have stage IV endo but because of God’s goodness, I’m pregnant with my third child. My pregnancies are terribly painful and even though some OBs have said that the pregnancy will help shed the endo, it hasn’t. I wish you the best and hope you find answers and some relief from the pain.

Blessings,
Neptune

Reply

Leah August 5, 2013 at 10:32 pm

I definitely want to join you on your journey! My story is very similar to yours. I am even at the same point in my life. I had issues starting at puberty, was diagnosed with endo through surgery when I was 21, and have now had three children. Now that they are older and I am no longer breastfeeding, my pain and bleeding have gotten much worse. I have spent the last several months doing tons of research. Suddenly, now that I am done having children, and am 35, my gynecologist is pushing a hysterectomy. I have joined several Facebook groups, read all sorts of books, and gotten information from many clinics across the United States. I happen to live in Michigan also. I have heard over and over again about excision and how it is so much different and better than other types of surgery. I am considering seeing a doctor in Chicago who I have heard wonderful things about. I have not heard anything about the center at U of M though. I would like to know more! Please feel free to contact me off this board if you feel like we could share information with each other!

Reply

Jessily Alejo August 6, 2013 at 1:18 pm

I have many of the symptoms that you have mentioned but i have to add that my body excretes a medium-large mucus like mass at times and causes me horrible pain!!!! they are saying its polyps that are detaching but it makes so much sense now that i read this!!!! any suggestions????

Reply

Pristine August 6, 2013 at 1:48 pm

I found this blog very interesting, because I too might have endo. My husband and I have been trying for a 2nd child for almost 2 years this December! I recently went to a doctor and he wanted to rule out PCOS and Endometriosis. I apparently don’t have PCOS. My lab work came out fine but my sonogram shows that I have a small cysts on my right ovary and some fluid in my pelvic area. My cycles last 33-35 days and my periods are really light after the 1st day. It usually last 3-4 days but the last 2-4 days, I can wear a pantyliner! Thats how light they are! I have absolutely no pain whatsoever! Thats the confusing part for me… I have none of the symptoms of endo, but he will not be able to know unless we have this surgery. With my first child, we got pregnant within 2-3 months!! But, I want to know if their are others in my situation that have endo and don’t show any of the common symptoms… Thanks.

Reply

Allison August 7, 2013 at 9:22 am

Thank God I have found someone who understands!! I have had endo since I was 14. I’ve underwent surgery and have tried multiple treatments to try and beat it. After successfully giving birth to my now 11 month old son things got worse. I am on Lupron Depot shot every 3 months. I have spent many nights crying because no one understood me. They thought I had a STD or another type of disease. I finally met my fiancé who didn’t think I was diseased. I’m so glad to know that I am not alone in this battle. Thank you for this!

Reply

Allison August 7, 2013 at 9:25 am

I deal with excruciating pain and horrendous bleeding. I’m on pain meds 24/7 and another hormone to control the hot flashes the lupron shot causes

Reply

Caffeinated Mama August 7, 2013 at 9:29 am

I hope you can find answers & relief quickly!

Reply

Suki August 7, 2013 at 2:59 pm

It feels like you wrote down my pain.
Got diagnosed at 19 too and had a healthy baby this far.
I hope you find many answers on your journey.

Reply

Dani Floyd August 10, 2013 at 7:49 pm

So sorry to hear about all you have gone through. I have not had endometriosis but my mother did. I remember in high school there would be days my mom would be in so much pain she couldn’t move. She’d been going to the doctor for years and they couldn’t figure out what was wrong with her. My Senior year they found cyst on her ovaries and she had to have her ovaries removed. A surgery that was supposed to take an hour turned into 4 because when they opened her up they discovered she had endometriosis. The doctor told her it was the worse case of endometrosis she had ever seen, it looked like all of her internal organs had basically become one because they were twisted and stuck together. My mom was 37 at the time of the surgery (2001). Her doctor told her endometriosis was very common in women her age that had received C-sections (she had one for me and my 2 other siblings ) because back then doctors would remove the baby and kind of just toss the internal organs around wherever instead of placing them where they were supposed to go. I can’t imagine how many years of pain she would have indured so in an odd way the cyst on her ovaries were a blessing in disguise. Before my mom I had never even heard of it. I’m glad they finally figured out what was wrong, but it seems like a common thing that it takes so long to diagnose. I hope they’ve developed better and faster ways to detect it.

Reply

Kristal August 10, 2013 at 8:49 pm

I was diagnosed with endometriosis thru a laparoscopy in 2008 after unexplained pain when I came off birth control to try to conceive and not being able to conceive for a year. After 2.5 years of trying to conceive we now have 2 beautiful babies:) my endo is still very painful and we aren’t having any more babies so I will be having a hysterectomy next month just so I will no longer have to deal with the pain and very abnormally heavy periods and never need a laparoscopy again to “clean up” the endo tissue. To many it is an extreme step to have a hysterectomy at 29 years old but I am keeping my ovaries (no early menopause) so I am unbelievably excited to have my uterus removed and never have to deal with this crippling disease again! I hope u find some answers and that there’s a light at the end of the tunnel for u as well!! Thank u for sharing ur story!!

Reply

Abby Petersen August 11, 2013 at 11:54 am

Below is a link to an amazing website full of natural solutions for women’s hormones and health. They really do work. I have a few friends with PCOS that now have no signs or symptoms and are regular with their cycles after 15 years+ of difficulties. One is actually pregnant with her 2nd without the use of fertility drugs this time and due in February!! Several others have also had endo issues also. I encourage everyone to explore how their body can be helped by natural products without the risk of side effects caused by pharmacueticals, it’s just a safer option. Click on the grey tab for “suggested protocol”.
http://www.everythingessential.me/HealthConcerns/MenstraulCramping.html#page=page-1

Reply

Graciane Souza August 13, 2013 at 2:53 pm

Thank you so much for sharing your life story. I can truly relate to every little word you are writing.
My life story is so similar to yours that its unbelievable!

Reply

Amanda September 2, 2013 at 2:46 am

I too suffer from endometriosis. I also grew up Michigan. Lol. I hope you find answers there. I’m looking forward to reading more.

Reply

Leave a Comment

Previous post:

Next post: