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endometriosis

I Am One in Eight…

“I’m so infertile, Nick Cannon couldn’t get me pregnant!” I cracked this terrible joke a couple of weeks ago to the nurse who was in charge of intake at my last egg retrieval.  It’s what I do, make dumb jokes when I’m stressed out or nervous. I always feel like the nurses and doctors are relieved when they finally put me under so I will shut up.

I’ve spent a lot of time in doctors’ offices these past few years. I’ve lost count of how many needles have been injected into my body. I used to be terrified of needles, and now it’s nothing to get a 1 1/2 inch needle into the backside.  I even got over the fear of injecting myself.  When you have to do three shots a day, and you husband is working late, and you HAVE to get that shot in before 6pm, you get over it.

Really, for as much as Gonal F and Menpur cost ($4350 this last round WITH insurance) the least they could do is give you a buzz, right?

Nah. I just get bloated and emotional, and I break out in cystic acne. It’s so freaking rude.

I am one in eight that suffers from infertility.

Infertility affects one in eight couples worldwide, and it’s something my husband and I have been struggling with for most of our sixteen years of marriage. Of course, I’m the problem. Severe endometriosis has basically fried my eggs, and although I make a lot of them, they’re all bad quality. (I’m like the “Forever 21” store for eggs. Lots of inventory, but all crap quality.) And there I go with the dumb jokes again…

I figured, like most people are able to do, that I would get pregnant easily. I’m healthy, strong, and in great shape.  And we did get pregnant on our second try when we were 28. I had a miscarriage six weeks later, and I figured that we could just get pregnant again. Ha. No. After ten years of trying to conceive- at first naturally, then with Clomid (the Devil Drug I call it), then with IUI.  After three failed rounds of IUI (Intrauterine Insemination) we had to finally go the IVF (In Vitro Fertilization) Route. That in itself is a HUGE undertaking. And it’s crazy expensive and most insurances don’t cover it.  Thanks for nothing, TRICARE!!! It’s tons of expensive injected medications, doctors’ appointments every other day for two weeks, then the egg retrieval. THEN they inject the eggs with your partner’s sperm, and you hope an embryo comes out of it. THEN you get the embryo placed into your uterus and hope it takes.  And then if it does take, you get another 8-10 weeks of progesterone injections into your backside. So, with all of this happening, you get to be a hormonal mess.

We were lucky. Our lone embryo took in 2021, and now we have a gorgeous 18-month-old son.  It was worth it all.

So, naturally, we had to try again, right? I mean, it worked once, so let’s give it another go.

Two unsuccessful IVF rounds later, I’m done. We’re done. At forty, having another baby on my own is clearly too much to ask the universe for.  Last Fall, we did IVF and got one good embryo- a girl this time. We had her transferred in February, and she didn’t take. We did another round this past month with the eggs retrieved a week ago, with four fertilizations- but no embryos yielded.  So, this is the end of the road for us. Maybe a donor egg could be the answer, but that’s another $40K investment with no guarantee that it will work.  Again, I am so lucky to have Brandon, and I have a wonderful life. I just want to let go and enjoy it, which has been really hard to do this past year with the barrage of hormones going in and out of my body. I’m looking forward to getting myself back.

One of the hardest things about being infertile was the constant unintentional emotional grenades. From being asked “When are you going to have babies?” to bosses (yes, plural. Kid you not) who told me NOT to get pregnant to seeing new stories about people abusing their children, every day is a minefield.

Again, one in eight Americans are affected by infertility. I ask you to remember this before saying something potentially insensitive. And use this as a reminder that you never really know what someone is going through, so please be mindful. And to all who are suffering, I see you, I hear you, and I am you. Stay strong.

And to all of you who are able to conceive easily, know how blessed you are!

 

Oh No, It’s Endo!

I normally shy away from getting super personal, but after a lot of thought and years of rolling it around in my mind, I figured I would share my story of dealing with Endometriosis.  Mainly because it’s a terrible condition that 11% of women suffer from, but it’s still not talked about enough- because, you know, periods are still a taboo topic in modern society. This leads to misdiagnosis, shame, and infertility.  I should know, because I got all three.  I figure if I can get even one young woman diagnosed and save her from what I went through, then this overshare is totally worth it!

First off, what is Endometriosis? Here’s the definition via The Mayo Clinic: “Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.”  So, basically, you have extra gunk growing in your uterus and when it’s that time of the month, it sheds with everything else, often causing extreme pain.  I mean, debilitating “I think my uterus is trying to murder me” pain. It can also cause adhesions, scarring, and is the leading cause of infertility, because all that fun stuff damages your eggs. Fun fact: You are born with the amount of eggs you have for life, so it’s not like you can generate new ones.  Kind of a flaw in the system if you ask me.

I honestly didn’t even know what Endo was until I was 27.  I started having really bad periods in my early twenties, and was a little concerned, because they started out of nowhere. I asked my doctor, and he said “It’s normal- try Midol”. Yeah, that doesn’t work, but ok.  When I was 24, I got really sick one night on my period and my husband took me to the hospital at Fort Stewart, GA.  I was almost delusional with pain, dizzy, had to leave work, etc.  I was told by the doctor there that I had “Dysmenorrhea” AKA “Painful Periods” (No, really? Thanks, doc.) and was told to take a Ibuprofen and get over it.  I felt so ashamed leaving the hospital, because I felt like I was being a drama queen and was making a big deal about nothing.  So I suffered for another three years until one day after my period started, I was in so much pain on my way to work, I literally almost had a wreck on I95 because I couldn’t concentrate on driving- AFTER taking four Ibuprofens that morning.  I also bled right through my pads twice that week within an hour each, staining the chair at work.  Fed up, I went to a different doctor, who told me I may have something called Endometriosis.  The problem is, the only way to diagnose it is with laparoscopic surgery -where they stick a little tube in your abdomen and diagnose and cut out tissue.  So, they did the surgery, and BINGO! Endo everywhere AND my tubes were wrapped up in scar tissue. They cleaned it out, and I got pregnant for the first time the next Spring, only to have a miscarriage three weeks later.  I figured I could easily get pregnant again. HA! Yeah, not so much.  And to make matters worse, Endo comes back. It’s like Kudzu in the South- just grows over EVERYTHING and you can’t kill it.

Uterine Kudzu. I like that.  Maybe that should go in a medical journal?

 

Since Endo comes back, I had four more surgeries to clean out the Endo and adhesions until the doctor said I could have no more.  Because, every time you have a surgery, you get MORE scar tissue. The last Laparoscopy I had, my bowels were glued to my pelvic wall by adhesions, and at this point the only way to cure it all is just have a full hysterectomy- where they take out the uterus. The problem is, I wanted a child.  You kind of need a uterus for that I hear.  And one of the only things you can do to relieve the pain is birth control.  So, I got to be on hella pain medication a few days a month because Ibuprofen and Midol is absolute crap.  Do you know how hard it is to get decent medicine to treat chronic pain?  Oh my gosh, they treat you like you are a drug addict. To be fair, there IS an opioid crisis in our country, but that really puts people like me- who have severe chronic pain- in a terrible position.  The only way to function with Stage 4 Endo is medication or Hysterectomy. This is the choice we get.  And you get shamed for both.  So, yeah, it’s been a super fun 13 years dealing with this!

One of the hardest parts – aside from severe pain- is the absolute shame that comes with it.  I would be working, and the pain would hit, and I couldn’t tell anyone.  Imagine trying to be live on the air while having a knife slice through your abdomen and you have to smile through it, because you don’t want to tell people what is wrong with you. Or be in a meeting with a bunch of men, and trying not to pass out.  It’s an embarrassing condition to have, as menstruation is still such a taboo topic. So many times, I had to cancel plans with friends due to the pain, and let’s not get started on the bloat! I looked like I was pregnant at times, because my stomach would swell so badly! But what do you tell people?  No one wants to hear about it or talk about it because it’s “gross”.  Ok, it is gross, but what the hell are we supposed to do about it?  And then there’s the infertility.  I was unable to conceive again, and it was heartbreaking. We tried everything we could, and kind of kept it to ourselves, save close family and friends.  So this led to the constant question: “When are you having kids?”  Or “Why don’t you want kids?” Or just the speculation- so many friends would tell me I was too skinny, worked out too much, drank too much wine (lies) or was too stressed… and I didn’t want to tell them the truth, because it was embarrassing.  Oh! And then all the friends that sell stuff on Facebook, like essential oils and isometrics or whatever would target me and tell me their stupid product would get me pregnant! I kid you not.  Please, if you have an infertile friend, just…don’t.  The only thing you can do is to feed them wine and tell them they’re pretty.  That always helps!

Thankfully I was able to concieve via IVF (In Vitro Fertilization) and have a gorgeous 17 month old boy to show for it.   For me, it was the only way I could ever procreate on my own due to endometriosis damaging my eggs. It’s an extremely expensive and physically/emotionally draining procedure- but it’s worth it!  But I would like to keep other women from having to go through what I went through. I just turned 40, and I am at the end of my reprodcutive years.  We did IVF again last year, and the embryo transfer failed last month.  We will try one more time next month, and then I’m done.  My doctor said I really need a hysterectomy , especially as I had a C-section to deliver Brandon. So, more adhesions! (Yayyyyy).  So I’m in pain 2 weeks out of the month now, and it’s getting to be really frustrating, to say the least. The only thing I can do is take medication and ride it out.

I know this is a long post, but it’s something I’ve been dealing with and finally felt like sharing. Had more been known about this condition when I was younger, or less shame involved with women’s cycles, perhaps I would have been more of an advocate for myself and my reproductive health. Maybe I would have frozen my eggs like so many are doing these days! It was never an option given to me 5-10 years ago.

Here are some symptoms of Endo. I had them all.

If you are a woman, and you are having severe period pain, don’t be ashamed. Get to your doctor NOW and see if you can get a diagnosis.  Don’t be shamed into thinking you’re a wimp.  You’re totally not. The pain is ridiculous, and no woman should ever have to go through it on just Midol.  The medical community needs to step up and do better.  You deserve it!

Oh No! It’s Endo!

I normally shy away from getting super personal, but after a lot of thought and years of rolling it around in my mind, I figured I would share my story of dealing with Endometriosis.  Mainly because it’s a terrible condition that 11% of women suffer from, but it’s still not talked about enough- because, you know, periods are still a taboo topic in modern society. This leads to misdiagnosis, shame, and infertility.  I should know, because I got all three.  I figure if I can get even one young woman diagnosed and save her from what I went through, then this overshare is totally worth it!

First off, what is Endometriosis? Here’s the definition via The Mayo Clinic: “Endometriosis (en-doe-me-tree-O-sis) is an often painful disorder in which tissue similar to the tissue that normally lines the inside of your uterus — the endometrium — grows outside your uterus. Endometriosis most commonly involves your ovaries, fallopian tubes and the tissue lining your pelvis.”  So, basically, you have extra gunk growing in your uterus and when it’s that time of the month, it sheds with everything else, often causing extreme pain.  I mean, debilitating “I think my uterus is trying to murder me” pain. It can also cause adhesions, scarring, and is the leading cause of infertility, because all that fun stuff damages your eggs. Fun fact: You are born with the amount of eggs you have for life, so it’s not like you can generate new ones.  Kind of a flaw in the system if you ask me.

I honestly didn’t even know what Endo was until I was 27.  I started having really bad periods in my early twenties, and was a little concerned, because they started out of nowhere. I asked my doctor, and he said “It’s normal- try Midol”. Yeah, that doesn’t work, but ok.  When I was 24, I got really sick one night on my period and my husband took me to the hospital at Fort Stewart, GA.  I was almost delusional with pain, dizzy, had to leave work, etc.  I was told by the doctor there that I had “Dysmenorrhea” AKA “Painful Periods” (No, really? Thanks, doc.) and was told to take a Ibuprofen and get over it.  I felt so ashamed leaving the hospital, because I felt like I was being a drama queen and was making a big deal about nothing.  So I suffered for another three years until one day after my period started, I was in so much pain on my way to work, I literally almost had a wreck on I95 because I couldn’t concentrate on driving- AFTER taking four Ibuprofens that morning.  I also bled right through my pads twice that week within an hour each, staining the chair at work.  Fed up, I went to a different doctor, who told me I may have something called Endometriosis.  The problem is, the only way to diagnose it is with laparoscopic surgery -where they stick a little tube in your abdomen and diagnose and cut out tissue.  So, they did the surgery, and BINGO! Endo everywhere AND my tubes were wrapped up in scar tissue. They cleaned it out, and I got pregnant for the first time the next Spring, only to have a miscarriage three weeks later.  I figured I could easily get pregnant again. HA! Yeah, not so much.  And to make matters worse, Endo comes back. It’s like Kudzu in the South- just grows over EVERYTHING and you can’t kill it.

Uterine Kudzu. I like that.  Maybe that should go in a medical journal?

 

Since Endo comes back, I had four more surgeries to clean out the Endo and adhesions until the doctor said I could have no more.  Because, every time you have a surgery, you get MORE scar tissue. The last Laparoscopy I had, my bowels were glued to my pelvic wall by adhesions, and at this point the only way to cure it all is just have a full hysterectomy- where they take out the uterus. The problem is, I wanted a child.  You kind of need a uterus for that I hear.  And one of the only things you can do to relieve the pain is birth control.  So, I got to be on hella pain medication a few days a month because Ibuprofen and Midol is absolute crap.  Do you know how hard it is to get decent medicine to treat chronic pain?  Oh my gosh, they treat you like you are a drug addict. To be fair, there IS an opioid crisis in our country, but that really puts people like me- who have severe chronic pain- in a terrible position.  The only way to function with Stage 4 Endo is medication or Hysterectomy. This is the choice we get.  And you get shamed for both.  So, yeah, it’s been a super fun 13 years dealing with this!

One of the hardest parts – aside from severe pain- is the absolute shame that comes with it.  I would be working, and the pain would hit, and I couldn’t tell anyone.  Imagine trying to be live on the air while having a knife slice through your abdomen and you have to smile through it, because you don’t want to tell people what is wrong with you. Or be in a meeting with a bunch of men, and trying not to pass out.  It’s an embarrassing condition to have, as menstruation is still such a taboo topic. So many times, I had to cancel plans with friends due to the pain, and let’s not get started on the bloat! I looked like I was pregnant at times, because my stomach would swell so badly! But what do you tell people?  No one wants to hear about it or talk about it because it’s “gross”.  Ok, it is gross, but what the hell are we supposed to do about it?  And then there’s the infertility.  I was unable to conceive again, and it was heartbreaking. We tried everything we could, and kind of kept it to ourselves, save close family and friends.  So this led to the constant question: “When are you having kids?”  Or “Why don’t you want kids?” Or just the speculation- so many friends would tell me I was too skinny, worked out too much, drank too much wine (lies) or was too stressed… and I didn’t want to tell them the truth, because it was embarrassing.  Oh! And then all the friends that sell stuff on Facebook, like essential oils and isometrics or whatever would target me and tell me their stupid product would get me pregnant! I kid you not.  Please, if you have an infertile friend, just…don’t.  The only thing you can do is to feed them wine and tell them they’re pretty.  That always helps!

Thankfully I was able to concieve via IVF (In Vitro Fertilization) and have a gorgeous 17 month old boy to show for it.   For me, it was the only way I could ever procreate on my own due to endometriosis damaging my eggs. It’s an extremely expensive and physically/emotionally draining procedure- but it’s worth it!  But I would like to keep other women from having to go through what I went through. I tried to concieve two more times with IVF in the past year, and both cycles failed. I ended up having my right ovary and tube removed last Fall, and the ovary was completely covered with endometriosis. Since having that surgery, the pain has decreased a little bit, so now I am only in moderate to severe pain one week out of the month. #Progress

I know this is a long post, but it’s something I’ve been dealing with and finally felt like sharing. Had more been known about this condition when I was younger, or less shame involved with women’s cycles, perhaps I would have been more of an advocate for myself and my reproductive health. Maybe I would have frozen my eggs like so many are doing these days! It was never an option given to me 5-10 years ago.

Here are some symptoms of Endo. I had them all.

If you are a woman, and you are having severe period pain, don’t be ashamed. Get to your doctor NOW and see if you can get a diagnosis.  Don’t be shamed into thinking you’re a wimp.  You’re totally not. The pain is ridiculous, and no woman should ever have to go through it on just Midol.  The medical community needs to step up and do better.  You deserve it!