Not sure what #MicroblogMondays is?Read the inaugural post which explains the idea and how you can participate too.
I've been seeing an ad on my Facebook for MyEndometriosisTeam, a social network for women with endo. I've been thinking about joining and just not having the time, but from when I first saw it until my computer had to restart, the tab was open in Chrome waiting for me. Tonight, I clicked to join, and now my anxiety is in full swing. I'm sitting here typing and playing a silly Facebook game and not saying anything out loud to my family while my skin feels too tight for my body and my muscles are rigid. I don't know why I'm reacting this strongly. Maybe it's my social anxiety and the fear of putting myself out there to meet new people and people not being interested in connecting with me. Here, most of my connections are people I've known for years on here, even if I was gone for a long time. And here feels safe. It could also be fear of what I'll find out, or of not learning and gaining anything useful. I don't know. But here goes, I guess.
Showing posts with label endo. Show all posts
Showing posts with label endo. Show all posts
Monday, August 01, 2016
Thursday, July 07, 2016
Answers and Questions
Well, I don't have fibroids, at least. I hadn't been sure how to feel at first, because at least it would have been an answer, but Papa Bear had pointed out the possible complications from fibroids and I felt better about not having them. That still leaves no real answers about the extent of my current...experience, though, because it's symptoms beyond what is expected with endo. Best guess is hormone changes, but apparently there's not really much of any research on hormones in people who lose an ovary.
The answer about the fibroids was mostly washed away by the whole nightmare experience of the ultrasound, though. The last time I was lying on that table, I was being told that my baby no longer had a heartbeat. To make it worse, it was the same tech, and she didn't remember that fact until Papa Bear reminded her. She didn't even see in my chart about what happened last year, so she was asking me about why I didn't have a right ovary. At least the doctor said they have 2 ultrasound techs at this point, so if I get that far, I can ask for the other one.
Since I don't have fibroids, getting that far now looks to rest on Clomid. The doctor still wants me to get an HSG to make sure my remaining tube is clear, and it looks like we'll be doing that in September. Provided it's clear (or gets clear from the dye going through), we'll start Clomid after that. One thing we're not sure of is how much of a real LH surge I'm having to even trigger ovulation, since last month I had the line on the OPK get darker than it had been but not darker than the control line. But the doctor said if that's what's wrong, Clomid will help.
He did also say that Clomid tends to make people feel cranky and have less energy. For those who have tried it, what has your experience been?
The answer about the fibroids was mostly washed away by the whole nightmare experience of the ultrasound, though. The last time I was lying on that table, I was being told that my baby no longer had a heartbeat. To make it worse, it was the same tech, and she didn't remember that fact until Papa Bear reminded her. She didn't even see in my chart about what happened last year, so she was asking me about why I didn't have a right ovary. At least the doctor said they have 2 ultrasound techs at this point, so if I get that far, I can ask for the other one.
Since I don't have fibroids, getting that far now looks to rest on Clomid. The doctor still wants me to get an HSG to make sure my remaining tube is clear, and it looks like we'll be doing that in September. Provided it's clear (or gets clear from the dye going through), we'll start Clomid after that. One thing we're not sure of is how much of a real LH surge I'm having to even trigger ovulation, since last month I had the line on the OPK get darker than it had been but not darker than the control line. But the doctor said if that's what's wrong, Clomid will help.
He did also say that Clomid tends to make people feel cranky and have less energy. For those who have tried it, what has your experience been?
Sunday, May 01, 2016
National Infertility Awareness Week: #StartAsking about Endometriosis
This year, for National Infertility Awareness Week, I would like for people to #StartAsking about endometriosis. I don't mean asking in a casual way, mentioning to your doctor, "Gee, I wonder if I could have this." I did that, and it almost killed me because I did not push the issue and get an answer until I was bleeding out on an operating table.
Looking back, it appears that I had symptoms of endometriosis from the beginning of my reproductive life. In high school, I took Advil by the handful for 10+ days a month because it was the only way I could get through the school day and function. I saw a doctor my senior year and she gave me a low dose Pill, but the word endometriosis was never mentioned. My freshman year of college the symptoms got far worse, and I was put on the highest dose Pill that's still made, along with iron pills for the amount of blood I had lost, but still the word endometriosis was never mentioned. At that point I hadn't heard of endometriosis, but I expected that my doctors would tell me if they suspected something was wrong. My mom had been on the same strong Pill for most of her life, and so I just figured I was like her.
When I was married the first time and we weren't successful with trying to conceive, we went through test after test, but nothing was ever found, so we had the fun diagnosis of "unexplained infertility." We looked at hormone levels and whether I could have a blocked tube, but never at endometriosis. At that point, I obviously wasn't using the Pill to control the pain anymore, but I had a doctor who prescribed a strong NSAID to help. He never mentioned endometriosis as a possibility even with that, simply helped me manage the pain.
When I started dating my current husband, he wondered whether the infertility could be the result of endometriosis, given my history, but then we conceived my son and the question was put aside until I had a cycle again. I finally asked the doctor that I saw for follow ups after my son was born, and she just said that the answer to that question probably didn't matter and wasn't worth pursing because pregnancy tends to improve endometriosis and because it couldn't be answered without laproscopic surgery. I just kept getting and taking the same strong NSAID that the doctor back in Maryland had given me, now prescribed by my Georgia doctors.
And that's where we left it until I learned that I had miscarried my second pregnancy and needed a D&C. The ultrasound had looked abnormal, but they thought it was a different kind of abnormal, a molar pregnancy with a bicornate uterus. What I actually had was an ectopic pregnancy, implanted on my ovary because my tube was too blocked by endometriosis for the egg to get through, even with how small an egg is. The doctors did not learn this until I was bleeding out because they had perforated my uterus in getting to where the baby actually was.
Obviously, I survived, and I still may be able to conceive in the future. Maybe. But the question that haunts me is, what if the endometriosis had been diagnosed earlier? What if I had pushed the question? What if my doctors had raised it, any of the doctors that I had seen over the years?
So please, #StartAsking about endometriosis. Women, #StartAsking your doctors, and start pushing the question if you are blown off. Doctors, #StartAsking if a patient exhibits symptoms. Your patients may or may not choose to have the surgery to find out, but they may not know they have a decision to make unless you raise the question.
Looking back, it appears that I had symptoms of endometriosis from the beginning of my reproductive life. In high school, I took Advil by the handful for 10+ days a month because it was the only way I could get through the school day and function. I saw a doctor my senior year and she gave me a low dose Pill, but the word endometriosis was never mentioned. My freshman year of college the symptoms got far worse, and I was put on the highest dose Pill that's still made, along with iron pills for the amount of blood I had lost, but still the word endometriosis was never mentioned. At that point I hadn't heard of endometriosis, but I expected that my doctors would tell me if they suspected something was wrong. My mom had been on the same strong Pill for most of her life, and so I just figured I was like her.
When I was married the first time and we weren't successful with trying to conceive, we went through test after test, but nothing was ever found, so we had the fun diagnosis of "unexplained infertility." We looked at hormone levels and whether I could have a blocked tube, but never at endometriosis. At that point, I obviously wasn't using the Pill to control the pain anymore, but I had a doctor who prescribed a strong NSAID to help. He never mentioned endometriosis as a possibility even with that, simply helped me manage the pain.
When I started dating my current husband, he wondered whether the infertility could be the result of endometriosis, given my history, but then we conceived my son and the question was put aside until I had a cycle again. I finally asked the doctor that I saw for follow ups after my son was born, and she just said that the answer to that question probably didn't matter and wasn't worth pursing because pregnancy tends to improve endometriosis and because it couldn't be answered without laproscopic surgery. I just kept getting and taking the same strong NSAID that the doctor back in Maryland had given me, now prescribed by my Georgia doctors.
And that's where we left it until I learned that I had miscarried my second pregnancy and needed a D&C. The ultrasound had looked abnormal, but they thought it was a different kind of abnormal, a molar pregnancy with a bicornate uterus. What I actually had was an ectopic pregnancy, implanted on my ovary because my tube was too blocked by endometriosis for the egg to get through, even with how small an egg is. The doctors did not learn this until I was bleeding out because they had perforated my uterus in getting to where the baby actually was.
Obviously, I survived, and I still may be able to conceive in the future. Maybe. But the question that haunts me is, what if the endometriosis had been diagnosed earlier? What if I had pushed the question? What if my doctors had raised it, any of the doctors that I had seen over the years?
So please, #StartAsking about endometriosis. Women, #StartAsking your doctors, and start pushing the question if you are blown off. Doctors, #StartAsking if a patient exhibits symptoms. Your patients may or may not choose to have the surgery to find out, but they may not know they have a decision to make unless you raise the question.
Tuesday, April 26, 2016
So Now What?
I had my doctor's appointment today. It was SO hard being there while not being pregnant, especially since it was the first time since the follow up appointments after the surgery. I was crying in the waiting room, although I was able to distract myself with my book and my silly Game of Thrones FB game.
It was better once my doctor came in. He greeted me with a hug and immediately understood how hard it was for me to be there. He said he had been rereading his notes from my case last year and that the hair on the back of his neck had risen again at how close a call it had been. One thing that I have appreciated with him has been that he has been very human through this. It would have been harder if he had been more of the "I'm always right, even when I'm not" type of doctor.
I told my doctor what has been going on, what symptoms I have been having that make me think the endo is back. He confirmed that there was endo tissue that he hadn't gotten on the left because there hadn't been time while keeping me alive. However, he also said that the symptoms I've been having may be more consistent with polyps than with endo. He did say the pattern I have been having with my cycle falls into the realm of "normal" but could also make sense with the endo still being a problem. I did forget to ask what stage the endo had been, so I'm going to call the nurse tomorrow and ask.
The key thing that he said, though, is that now that I have been diagnosed with endo, I can get things covered by insurance because it's testing and treating the adhesions from the endo, a diagnosed medical condition, rather than treating "unexplained infertility." The first things he wants to check are the possibilities of polyps, a luteal phase defect, or another blocked tube. He wants to do a kind of ultrasound to look for polyps, and he wants to do an HSG to see if adhesions are blocking my remaining tube. I'll be calling around for prices on the HSG since that isn't in his office and even though insurance would cover it, I still have to be price-conscious because of having a deductible. To check out the possibility of luteal phase defect, he wants me to start doing OPKs again so that he can then test my progesterone level a week after ovulation. I wonder if I should start doing BBT again to go with it.
Depending on what we find out, we may be looking at anything from oral progesterone to Clomid to IUI. Whether it falls into what insurance will cover or not, I can do anything short of IVF with him instead of with a fertility clinic. I feel good about that, at least. I know that, after what happened last year, he will pull and work anything he can to help us. He thanked me for coming back to him after what happened, but it's what felt the most right, both because of how committed he is to us and because of the midwives there, who kept my son from being a c-section.
We will see what happens, but it's nice to be able to do something other than wonder and then despair every month.
It was better once my doctor came in. He greeted me with a hug and immediately understood how hard it was for me to be there. He said he had been rereading his notes from my case last year and that the hair on the back of his neck had risen again at how close a call it had been. One thing that I have appreciated with him has been that he has been very human through this. It would have been harder if he had been more of the "I'm always right, even when I'm not" type of doctor.
I told my doctor what has been going on, what symptoms I have been having that make me think the endo is back. He confirmed that there was endo tissue that he hadn't gotten on the left because there hadn't been time while keeping me alive. However, he also said that the symptoms I've been having may be more consistent with polyps than with endo. He did say the pattern I have been having with my cycle falls into the realm of "normal" but could also make sense with the endo still being a problem. I did forget to ask what stage the endo had been, so I'm going to call the nurse tomorrow and ask.
The key thing that he said, though, is that now that I have been diagnosed with endo, I can get things covered by insurance because it's testing and treating the adhesions from the endo, a diagnosed medical condition, rather than treating "unexplained infertility." The first things he wants to check are the possibilities of polyps, a luteal phase defect, or another blocked tube. He wants to do a kind of ultrasound to look for polyps, and he wants to do an HSG to see if adhesions are blocking my remaining tube. I'll be calling around for prices on the HSG since that isn't in his office and even though insurance would cover it, I still have to be price-conscious because of having a deductible. To check out the possibility of luteal phase defect, he wants me to start doing OPKs again so that he can then test my progesterone level a week after ovulation. I wonder if I should start doing BBT again to go with it.
Depending on what we find out, we may be looking at anything from oral progesterone to Clomid to IUI. Whether it falls into what insurance will cover or not, I can do anything short of IVF with him instead of with a fertility clinic. I feel good about that, at least. I know that, after what happened last year, he will pull and work anything he can to help us. He thanked me for coming back to him after what happened, but it's what felt the most right, both because of how committed he is to us and because of the midwives there, who kept my son from being a c-section.
We will see what happens, but it's nice to be able to do something other than wonder and then despair every month.
Monday, April 25, 2016
Doctor, Doctor, Gimme the News
Tomorrow morning I go back to the doctor who had done my D&C and, in the process, found my endo. It's time for my yearly fun appointment, with all the fun since my mom died of a gynecologic cancer. I need to talk to him about it seeming like the endo is back and discuss what we should do about it. And then I most likely get to consider the finances and whether to pay for more surgery if it's recommended or whether to keep masking it with NSAIDs. Fun timing, especially since this Sunday will be a year since we found out I was pregnant with Otter.
Sunday, March 27, 2016
Ugh
I'm pretty sure the endo is back full force. I've got an appointment at the end of April with the doctor who did my surgery last summer, and I have quite a few questions for him. I'm not going to give all the gross details here, but I wish I had other people who had it that I knew well enough to ask the gross questions.
Basically, at this point I hate being a woman. Not because of sexism or anything like that, but because there's nothing good for me physically about being a woman. I have boobs big enough that I can't wear button-down shirts or bras with underwires, they hurt when I run, and I have sweat issues in the summer. And I have other parts that spend a quarter of my life making a huge mess and leaving me in pain and reuse to do what they were designed to do.
Is anyone out there who has endo willing to talk frankly about their symptoms?
Basically, at this point I hate being a woman. Not because of sexism or anything like that, but because there's nothing good for me physically about being a woman. I have boobs big enough that I can't wear button-down shirts or bras with underwires, they hurt when I run, and I have sweat issues in the summer. And I have other parts that spend a quarter of my life making a huge mess and leaving me in pain and reuse to do what they were designed to do.
Is anyone out there who has endo willing to talk frankly about their symptoms?
Saturday, February 06, 2016
A Different Kind of Self-Hate
I hate my body.
I don't mean that I hate my appearance. I mean, I do hate it plenty of times, I hate the shape of my body, I hate how fat I've always been. But what I mean is that I hate my body on the inside.
I hate the way my body fails me. I hate what my body does to me. When I work with clients on not hating their bodies, one thing I work on is changing the focus from how their body looks to the ways their body is powerful and what their body can do for them.
But what my body can do for me is pain. What my body can do for me is fail. Fail to be a real woman. Fail to carry my baby. Fail to even put my baby in the right place in my body.
I found myself this week focusing on trying to "get ahead of the pain" with how I timed taking my medicine, and it felt mentally like trying to get ahead of the pain as I recovered from the surgery. There's something wrong with that. I find myself rationing my medicine because of how expensive it is. And that's a generic, it's just a rare one. There's something wrong with that. It's my body, failing me like it does every month.
What's there to love about that?
I don't mean that I hate my appearance. I mean, I do hate it plenty of times, I hate the shape of my body, I hate how fat I've always been. But what I mean is that I hate my body on the inside.
I hate the way my body fails me. I hate what my body does to me. When I work with clients on not hating their bodies, one thing I work on is changing the focus from how their body looks to the ways their body is powerful and what their body can do for them.
But what my body can do for me is pain. What my body can do for me is fail. Fail to be a real woman. Fail to carry my baby. Fail to even put my baby in the right place in my body.
I found myself this week focusing on trying to "get ahead of the pain" with how I timed taking my medicine, and it felt mentally like trying to get ahead of the pain as I recovered from the surgery. There's something wrong with that. I find myself rationing my medicine because of how expensive it is. And that's a generic, it's just a rare one. There's something wrong with that. It's my body, failing me like it does every month.
What's there to love about that?
Thursday, January 28, 2016
Grief is Why We Tell the Story
I've been listening to the soundtrack for Once on this Island over and over as I introduce the older kids to it (and then keep playing it when they're not in the car, which is most of my driving time). If you go by the measurement of how long it takes me to wear out the CD, Wicked is definitely my favorite musical, with Once on this Island and Ragtime close behind. This song made me tear up as I was driving to work this morning.
For those who aren't familiar with it, the end of the show is very bittersweet, as the main character dies for her love. This song celebrates the sharing of stories within societies and families and across generations.
"Life is why we tell the story
Pain is why we tell the story
Love is why we tell the story
Grief is why we tell the story
Hope is why we tell the story
Faith is why we tell the story
You are why we tell the story."
This fits with why I talk about my loss of Otter. The whole story of Once on this Island is being passed down from older generation to younger in a peasant village, and it made me think of telling my son some day about his sibling, or of telling any other children we may be able to have about their other sibling that they never knew.
All of these are why we tell the story. Otter had life, even if it was not life outside of my body. We loved Otter, and losing her (see past post for why Otter has a gender in my writing) led to pain and grief. The circumstances surrounding the loss ruined the hope that we had, but they also led to the possibility of new hope (if I could only feel it myself) of conception not being affected by endometriosis. I try to have faith that we will be able to have another child.
And my son (as well as any others we may have) is why we tell the story. At some point in the future, he will know what a miracle it was that I was able to conceive and carry him. Because even though Otter came and went after him, it is somewhat his story as well.
For those who aren't familiar with it, the end of the show is very bittersweet, as the main character dies for her love. This song celebrates the sharing of stories within societies and families and across generations.
"Life is why we tell the story
Pain is why we tell the story
Love is why we tell the story
Grief is why we tell the story
Hope is why we tell the story
Faith is why we tell the story
You are why we tell the story."
This fits with why I talk about my loss of Otter. The whole story of Once on this Island is being passed down from older generation to younger in a peasant village, and it made me think of telling my son some day about his sibling, or of telling any other children we may be able to have about their other sibling that they never knew.
All of these are why we tell the story. Otter had life, even if it was not life outside of my body. We loved Otter, and losing her (see past post for why Otter has a gender in my writing) led to pain and grief. The circumstances surrounding the loss ruined the hope that we had, but they also led to the possibility of new hope (if I could only feel it myself) of conception not being affected by endometriosis. I try to have faith that we will be able to have another child.
And my son (as well as any others we may have) is why we tell the story. At some point in the future, he will know what a miracle it was that I was able to conceive and carry him. Because even though Otter came and went after him, it is somewhat his story as well.
Thursday, January 07, 2016
I Didn't Want to Need This
I hadn't done anything to deactivate this blog or anything, but I thought I had outgrown it in my process. I had been able to conceive quickly in my second marriage, and I have a healthy now-toddler.
But then after getting pregnant unexpectedly in May, we lost the baby at 10 1/2 weeks. And I almost died. (Literally, not hyperbole here.) Apparently, I was a once-in-a-career case. I could have lived better without that recognition. Long story (which will probably come out in another post) short, the type of miscarriage was misdiagnosed, and the true cause wasn't figured out until I was bleeding out on the table during my D&C. In the end, I lost my right tube and ovary and went to ICU overnight, and we learned that I had endometriosis. Which, for the record, spellcheck doesn't even recognize as a work. That says something to my cynical little heart.
Today would have been my due date. January 6 or 7, depending on whether you focus on counting weeks since LMP, like my husband was, or the date guess from the first sonogram, like I was. That's why I'm posting at night like this, to be right on the border between the two.
I've got so many feelings that I can't even identify all of them. And I'm a therapist, so that takes a lot! I had been managing ok (as compared to what I expect from tomorrow, at least, since I was focused more on tomorrow as the due date) and bracing myself for tomorrow. And then I ran into my best friend from work, who had a miscarriage at the same time I did. And I lost it. Sobbing into her shoulder. Which makes sense, I know. But it broke the seal on all the feels. The rest of the day, I've been pinging back and forth between falling apart and holding myself back from falling apart.
One of the main feelings that is predominating (aside from pain so deep that I can't really describe it from there right now) is a deep and burning anger at the medical professionals that I've dealt with over the years. I've been a patient for excessive PMS pain since my freshman year of college. I spent all of my time from when lesser meds didn't work (spectacularly) until I was ready to start TTC with my ex on the strongest Pill that is even still made. I loved the doctor that prescribed a strong NSAID so that I had something to take when I wasn't taking the Pill anymore. But why just give me more and stronger meds without ever bringing up the possibility of endo? I had about a year, all told, of various infertility testing and monitoring. But why didn't anyone bring up the possibility of endo? When doctors didn't bring it up, or dismissed it if I did, that sent the message that I should just suck it up and manage with the meds because periods hurt and that's just what happens. And that almost killed me later.
I don't know how often I will be posting. I tried to do another blog before and when I was pregnant with my son, and one of the main things I learned was that I had neither the time nor the energy for blogging. But I think I need this. I need to reconnect with the ALI community. I need to find other people like me. I was scanning FB tonight looking for people on chat to be able to talk to and relate to, and most of the people who were on at the time didn't have the experience to relate. And I'm glad they don't. I hate that my work best friend can relate. I hate it for other people who have told me they can. I don't want anyone else to be able to relate. But since there are people who have already had their losses and are still in their struggles, I need to find them and connect with them again.
But then after getting pregnant unexpectedly in May, we lost the baby at 10 1/2 weeks. And I almost died. (Literally, not hyperbole here.) Apparently, I was a once-in-a-career case. I could have lived better without that recognition. Long story (which will probably come out in another post) short, the type of miscarriage was misdiagnosed, and the true cause wasn't figured out until I was bleeding out on the table during my D&C. In the end, I lost my right tube and ovary and went to ICU overnight, and we learned that I had endometriosis. Which, for the record, spellcheck doesn't even recognize as a work. That says something to my cynical little heart.
Today would have been my due date. January 6 or 7, depending on whether you focus on counting weeks since LMP, like my husband was, or the date guess from the first sonogram, like I was. That's why I'm posting at night like this, to be right on the border between the two.
I've got so many feelings that I can't even identify all of them. And I'm a therapist, so that takes a lot! I had been managing ok (as compared to what I expect from tomorrow, at least, since I was focused more on tomorrow as the due date) and bracing myself for tomorrow. And then I ran into my best friend from work, who had a miscarriage at the same time I did. And I lost it. Sobbing into her shoulder. Which makes sense, I know. But it broke the seal on all the feels. The rest of the day, I've been pinging back and forth between falling apart and holding myself back from falling apart.
One of the main feelings that is predominating (aside from pain so deep that I can't really describe it from there right now) is a deep and burning anger at the medical professionals that I've dealt with over the years. I've been a patient for excessive PMS pain since my freshman year of college. I spent all of my time from when lesser meds didn't work (spectacularly) until I was ready to start TTC with my ex on the strongest Pill that is even still made. I loved the doctor that prescribed a strong NSAID so that I had something to take when I wasn't taking the Pill anymore. But why just give me more and stronger meds without ever bringing up the possibility of endo? I had about a year, all told, of various infertility testing and monitoring. But why didn't anyone bring up the possibility of endo? When doctors didn't bring it up, or dismissed it if I did, that sent the message that I should just suck it up and manage with the meds because periods hurt and that's just what happens. And that almost killed me later.
I don't know how often I will be posting. I tried to do another blog before and when I was pregnant with my son, and one of the main things I learned was that I had neither the time nor the energy for blogging. But I think I need this. I need to reconnect with the ALI community. I need to find other people like me. I was scanning FB tonight looking for people on chat to be able to talk to and relate to, and most of the people who were on at the time didn't have the experience to relate. And I'm glad they don't. I hate that my work best friend can relate. I hate it for other people who have told me they can. I don't want anyone else to be able to relate. But since there are people who have already had their losses and are still in their struggles, I need to find them and connect with them again.
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