Disclaimer: If you don’t have or never had a uterus, you might not want to read this post. Just sayin’ 🙂
This article originally appeared on my former blog in 2017. *BELOW IS FROM THE ORIGINAL 2017 ARTICLE*Â
Getting Diagnosed with Endometriosis & Becoming Pregnant
I became pregnant with my first daughter at the age of 29 after several years of trying with no hope and no explanation or known cause from any doctor I saw until I finally found my current gynecology group. It was discovered during the first visit that I had a uterine polyp and suspected endometriosis. I told the doctor my symptoms and an internal ultrasound was done which is what revealed the polyp. No doctor I had seen in the past had even offered to perform an ultrasound. I was told repeatedly that I’m young and to give it six months before infertility can be discussed. Needless to say, not only did I have a uterine polyp, but endometriosis was also discovered. After both were removed, I became pregnant within several weeks.
Fast forward about a year and a half later and I was back in the hospital to remove another polyp that had been discovered. The plan was to have another baby but it didn’t happen. When it was a little more than two years after having my first baby, I assumed the endometriosis must have come back by now. Thinking there was no possible way I could become pregnant again with it, I was quite surprised to find out another little girl would be arriving.
Neither baby, of course, came without drama. The first was born prematurely at 35 weeks via C-section after I spent three weeks in the hospital on bed rest as the amniotic fluid was no longer measurable. The second time around, doctors were ahead of the game by placing me in the “high-risk” pregnancy category. Ultrasounds repeatedly showed the fluid level was right on par. Everything was going well until one day I stopped feeling the baby moving. After visiting my doctor and being sent to the hospital, I ended up in emergency C-section that night at 36 weeks. It was discovered the cord was wrapped around the baby’s neck twice and that I had been in labor for approximately two or three days prior. Hey, how would I know? I never felt labor before.
Endometriosis…Part 2
These babies are now nine and six. Oh, how time flies! With that being said, there has been an awful lot of time for my endometriosis to come back in full force. According to my doctor, endometriosis never goes away. The laparoscopic surgery done to remove the disease only lasts for a few cycles. Pregnancy and hormonal contraceptives also keep this beast at bay due to the lack of ovulation. About a year after my second daughter was born, I did take birth control pills on and off for a while when some ovarian cysts were discovered. However, a I stopped after about two years because I was concerned about the side effects, such as weight gain, moodiness and a spike in blood pressure. So, one day I just decided to stop taking them all together.
Cue lion’s roar. Guess what? It’s baaack. Oh, excuse me. I mean, it’s wooorse. It never went away; it was merely suppressed. And it took me a long time to understand that fully. I got so used to not having symptoms when I was taking the medication that I forgot what it was like to have them at all. So, little by little, month after month, cycle after cycle, the disease continued to spread like the plague bringing with it unbearable pain, extremely heavy and ridiculously lengthy periods, fatigue, dizziness, headaches, nausea, anemia and a new symptom – gastrointestinal issues.
It’s a Gas, Gas, Gas!
The funny part about it though was that I only had the gastro issues shortly before and during my period. Hmm…strange. The bloating was so bad, some days I looked six months pregnant. I remember lying on the floor after eating out with the family following my daughter’s dance recital, screaming in pain from indigestion. That night, I drove to Walgreens at 10:00 to stock up on Gas-X. Somehow this became a family joke because my husband and daughter were amused to put these chewable gems in my Christmas stocking this year. Hahaha! So funny! In case you were wondering, that was written with the most sarcasm possible.
Anyway, in addition to the symptoms already described, I also had pain and pressure on the bladder and bowels. There were days I couldn’t even sit down without pain. In fact, one day I was driving to work and thought I was going to pass out from the pain. I was convinced it was an ovarian cyst again. I had had them before and also felt the excruciating pain of them rupturing. So, I took some ibuprofen, sucked it up and taught my classes.
Dealing with Depression & a New Diagnosis
As my menstrual cycle grew shorter and shorter (down to 25 days) and my periods grew longer and longer (sometimes 10-12 days), my quality of life began declining. The pain was overwhelming and the only way I can describe it is that it felt like there was someone inside of me trying to cut his or her way out with a knife. I spiraled into a state of depression. I stopped making time for myself and instead of blogging, creating new recipes and working out at the gym, I focused on work and responsibilities at home, such as the kids and housekeeping. It took a long time for me to realize that I needed to finally do something about this.
It was time to make an appointment to see my gynecologist. I described my symptoms and waited to hear that I had an ovarian cyst and my endometriosis was probably “back.” Instead, I was told that in addition to the endometriosis that “never went away,” the doctor suspected I most likely also now had something called adenomyosis. Adding fuel to the fire, the doctor noticed some gastro issues as well with the potential diagnosis being IBS-C related to menstruation.
So, all my ferocious beasts came together. The roaring lion (endometriosis), the sneaky tiger (adenomyosis) and the bear (IBS), which awakens from its hibernation ready to pounce.
Not Ready for the News
I had never heard of adenomyosis before. Unlike endometriosis which is when the endometrium grows outside of the uterus, adenomyosis is when endometrial tissue exists and grows the uterine wall. It also causes an enlarged uterus. Unfortunately, the only cure is hysterectomy. When that word came out of my doctor’s mouth, it hit me like a ton of bricks.
“Now hold on a minute! I’m not even 40 yet!” I screamed (in my head, to myself).
At this time, I am not ready to blast right into menopause before the age of 40. And although I am not actively trying for a third child, I don’t want to be forced to make that decision right now. The finality of it is what I am struggling with and what ultimately led me to consider the other options for treatment, one of which was going back on hormonal birth control, but this time, continuously without the placebo pills. The purpose of doing this is to stop menstruation from occurring, thereby (hopefully) eliminating the symptoms associated with it.
Taking Control
Before making a decision about the medication, I slipped into a state of depression again. I isolated myself and felt lonely and less “womanly.” I cried. I thought too much. And then, I finally decided it was time to take my life back. I called the doctor’s office and request the prescription be called into my pharmacy. The doctor chose a different pill than any I had taken in the past. Perhaps this time I will be able to tolerate any side effects. I just have to remind myself what to compare them to…the lion, the tiger and the bear.
If anyone reading this has experienced or is experiencing any of these conditions, please feel free to comment below. I would love to hear your feedback, if this post helped you in any way, how you are doing, what worked/didn’t work for you and any insight you may have. I look forward to providing an update in the future and posting a new recipe very soon.
*2019 UPDATE*
The State of the Uterus – Controlling Endometriosis Pain
When I first started taking the continuous birth control medication, which was the treatment suggested by my doctor in lieu of hysterectomy, the endometriosis pain and the pain I had been experiencing due to my related IBS and potential adenomyosis seemed to lighten up significantly. However, on the downside, instead of no period, I had a perpetual period. I think it was five months of constant bleeding minus a week or two here and there. Not the result I was hoping for! I had to experiment with dosage and then…Eureka! Something finally worked! It turned out that I needed a much higher estrogen dose than is typically prescribed.
I’m happy to report that without having a monthly period, the endometriosis pain has subsided significantly! And, I’m feeling better than I ever have! But, perhaps I can’t contribute everything to the medicine alone. I did DRASTICALLY change my diet as well, primarily cutting out refined sugars and cutting back on gluten, which in addition to the medicine, has helped control some of the pain and hormonal issues like acne. Doing so also helped me lose 10 pounds and significantly reduced my bloated belly.
Unfortunately, I know that the medication is just a “bandaid” and that’s why I turned to diet changes as well.
Getting Diagnosed with Endometriosis & Becoming Pregnant
I became pregnant with my first daughter at the age of 29 after several years of trying with no hope and no explanation or known cause from any doctor I saw until I finally found my current gynecology group. It was discovered during the first visit that I had a uterine polyp and suspected endometriosis. I told the doctor my symptoms and an internal ultrasound was done which is what revealed the polyp. No doctor I had seen in the past had even offered to perform an ultrasound. I was told repeatedly that I’m young and to give it six months before infertility can be discussed. Needless to say, not only did I have a uterine polyp, but endometriosis was also discovered. After both were removed, I became pregnant within several weeks.
Fast forward about a year and a half later and I was back in the hospital to remove another polyp that had been discovered. The plan was to have another baby but it didn’t happen. When it was a little more than two years after having my first baby, I assumed the endometriosis must have come back by now. Thinking there was no possible way I could become pregnant again with it, I was quite surprised to find out another little girl would be arriving.
Neither baby, of course, came without drama. The first was born prematurely at 35 weeks via C-section after I spent three weeks in the hospital on bed rest as the amniotic fluid was no longer measurable. The second time around, doctors were ahead of the game by placing me in the “high-risk” pregnancy category. Ultrasounds repeatedly showed the fluid level was right on par. Everything was going well until one day I stopped feeling the baby moving. After visiting my doctor and being sent to the hospital, I ended up in emergency C-section that night at 36 weeks. It was discovered the cord was wrapped around the baby’s neck twice and that I had been in labor for approximately two or three days prior. Hey, how would I know? I never felt labor before.
Endometriosis…Part 2
These babies are now nine and six. Oh, how time flies! With that being said, there has been an awful lot of time for my endometriosis to come back in full force. According to my doctor, endometriosis never goes away. The laparoscopic surgery done to remove the disease only lasts for a few cycles. Pregnancy and hormonal contraceptives also keep this beast at bay due to the lack of ovulation. About a year after my second daughter was born, I did take birth control pills on and off for a while when some ovarian cysts were discovered. However, a I stopped after about two years because I was concerned about the side effects, such as weight gain, moodiness and a spike in blood pressure. So, one day I just decided to stop taking them all together.
Cue lion’s roar. Guess what? It’s baaack. Oh, excuse me. I mean, it’s wooorse. It never went away; it was merely suppressed. And it took me a long time to understand that fully. I got so used to not having symptoms when I was taking the medication that I forgot what it was like to have them at all. So, little by little, month after month, cycle after cycle, the disease continued to spread like the plague bringing with it unbearable pain, extremely heavy and ridiculously lengthy periods, fatigue, dizziness, headaches, nausea, anemia and a new symptom – gastrointestinal issues.
It’s a Gas, Gas, Gas!
The funny part about it though was that I only had the gastro issues shortly before and during my period. Hmm…strange. The bloating was so bad, some days I looked six months pregnant. I remember lying on the floor after eating out with the family following my daughter’s dance recital, screaming in pain from indigestion. That night, I drove to Walgreens at 10:00 to stock up on Gas-X. Somehow this became a family joke because my husband and daughter were amused to put these chewable gems in my Christmas stocking this year. Hahaha! So funny! In case you were wondering, that was written with the most sarcasm possible.
Anyway, in addition to the symptoms already described, I also had pain and pressure on the bladder and bowels. There were days I couldn’t even sit down without pain. In fact, one day I was driving to work and thought I was going to pass out from the pain. I was convinced it was an ovarian cyst again. I had had them before and also felt the excruciating pain of them rupturing. So, I took some ibuprofen, sucked it up and taught my classes.
Dealing with Depression & a New Diagnosis
As my menstrual cycle grew shorter and shorter (down to 25 days) and my periods grew longer and longer (sometimes 10-12 days), my quality of life began declining. The pain was overwhelming and the only way I can describe it is that it felt like there was someone inside of me trying to cut his or her way out with a knife. I spiraled into a state of depression. I stopped making time for myself and instead of blogging, creating new recipes and working out at the gym, I focused on work and responsibilities at home, such as the kids and housekeeping. It took a long time for me to realize that I needed to finally do something about this.
It was time to make an appointment to see my gynecologist. I described my symptoms and waited to hear that I had an ovarian cyst and my endometriosis was probably “back.” Instead, I was told that in addition to the endometriosis that “never went away,” the doctor suspected I most likely also now had something called adenomyosis. Adding fuel to the fire, the doctor noticed some gastro issues as well with the potential diagnosis being IBS-C related to menstruation.
So, all my ferocious beasts came together. The roaring lion (endometriosis), the sneaky tiger (adenomyosis) and the bear (IBS), which awakens from its hibernation ready to pounce.
Not Ready for the News
I had never heard of adenomyosis before. Unlike endometriosis which is when the endometrium grows outside of the uterus, adenomyosis is when endometrial tissue exists and grows the uterine wall. It also causes an enlarged uterus. Unfortunately, the only cure is hysterectomy. When that word came out of my doctor’s mouth, it hit me like a ton of bricks.
“Now hold on a minute! I’m not even 40 yet!” I screamed (in my head, to myself).
At this time, I am not ready to blast right into menopause before the age of 40. And although I am not actively trying for a third child, I don’t want to be forced to make that decision right now. The finality of it is what I am struggling with and what ultimately led me to consider the other options for treatment, one of which was going back on hormonal birth control, but this time, continuously without the placebo pills. The purpose of doing this is to stop menstruation from occurring, thereby (hopefully) eliminating the symptoms associated with it.
Taking Control
Before making a decision about the medication, I slipped into a state of depression again. I isolated myself and felt lonely and less “womanly.” I cried. I thought too much. And then, I finally decided it was time to take my life back. I called the doctor’s office and request the prescription be called into my pharmacy. The doctor chose a different pill than any I had taken in the past. Perhaps this time I will be able to tolerate any side effects. I just have to remind myself what to compare them to…the lion, the tiger and the bear.
If anyone reading this has experienced or is experiencing any of these conditions, please feel free to comment below. I would love to hear your feedback, if this post helped you in any way, how you are doing, what worked/didn’t work for you and any insight you may have. I look forward to providing an update in the future.
*2018 UPDATE*
The State of the Uterus – Controlling Endometriosis Pain
When I first started taking the continuous birth control medication, which was the treatment suggested by my doctor in lieu of hysterectomy, the endometriosis pain and the pain I had been experiencing due to my related IBS and potential adenomyosis seemed to lighten up significantly. However, on the downside, instead of no period, I had a perpetual period. I think it was five months of constant bleeding minus a week or two here and there. Not the result I was hoping for! I had to experiment with dosage and then…Eureka! Something finally worked! It turned out that I needed a much higher estrogen dose than is typically prescribed.
I’m happy to report that without having a monthly period, the endometriosis pain has subsided! And, I’m feeling better than I ever have! But, perhaps I can’t contribute everything to the medicine alone. I did DRASTICALLY change my diet as well, primarily cutting out refined sugars and cutting back on gluten, which in addition to the medicine, has helped control some of the pain and hormonal issues like acne. Doing so also helped me lose 10 pounds and significantly reduced my bloated belly.
Unfortunately, I know that the medication is just a “bandaid” and that’s why I turned to diet changes as well.
*2021 UPDATE*
In late summer of 2020, I started bleeding for no reason…and it wouldn’t stop.
My family and I moved out of state in 2019, so I have a new doctor.
My new doctor directed me to stop taking my birth control and take a different medication (Megestrol) for a brief time to stop the bleeding.
Unfortunately, this medication caused me to put on over 5 pounds which I still have yet to lose to this day.
Anyway, my doc also ordered an ultrasound which found fibroids and a defect in my uterus at the site of my C-section scar. I asked how likely it is for a person on continuous birth control to develop fibroids after never having them before and the doctor said it’s highly unlikely. But of course I can do it. Go figure!
It was determined that the high estrogen was causing the bleeding and that I needed a lower dose.
First, we tried a higher dose of progesterone and lower estrogen but that just made me incredibly bloated and feeling like I had a UTI 24-7. No fun!
So, then my progesterone was significantly lowered along with the estrogen and now we’ve found a pill that is working (fingers crossed it stays that way).
The doctor seems to think as long as the meds continue to work, I can take them until menopause and avoid a hysterectomy.
We shall see how that plays out.
For now, that is all.
Please note this post originally appeared online on March 11, 2017; however, changes and updates have been made.
Comments from the original post
Debbie Bell July 29, 2020 at 5:34 pm(Edit)
I have been approx 18 years suffering and numerous consultants and fobbed off so many times. For some unknown reason they have never done a laparoscopy. I was told I have all the indicators for PCOS but it was never formally diagnosed. I have had X2 failed attempts at hysteroscopy as they couldn’t get access. 3 years ago I had an MRI and was told I had adenomyosis and that if I didn’t want hormonal treatment I basically just had to suffer (I desparately wanted kids) I’ve been diagnosed as unknown infertility for years. Finally I have a consultant who said I have lots of scar tissue and adhesions in my uterus and she suspects I also have endometriosis. I’m now waiting for a hysterectomy which is my only solution to pain, I am 46 years old and never managed to have children but now I just need to be free of pain and start to have some life for me! Wish me luck!
REPLY
Sherri July 30, 2020 at 9:15 am(Edit)
So sorry you’ve been through all that, Debbie, and for so long. Good luck in your surgery and hope you are finally able to rid of your pain! Feel free to stop back and share if you’d like afterward. Wishing you the best! 🙂
REPLY
rachel November 28, 2019 at 11:02 am(Edit)
Hi I don’t know how old this post is but I have been diagnosed with adenomyosis and suspecting emdemetrosis
I’ve alos had ibs for my entire life as far bad as I can remember but I’m awaiting gaunacolgy appointment. But my docter has tried all birth control options over years just to calm down my periods and help with my moods lol. Not worked so I know Reading options are to operate tbh I have had all my kids now and I had terrible labour’s and my parter has had snip so I’m going to be asking for the hysterectomy to finally have my life back I know I will have side affects and hormone changes. My mum had all the same but hers turnt cancerous one day and I don’t want the risk when Im 100% done having kids now. Thanks Rachel
REPLY
Sherri December 01, 2019 at 2:46 pm(Edit)
Thanks for sharing your story, Rachel. I’m sorry to hear about you mom’s cancer, and I’m glad you are going to talk to your doctor about your options and potential hysterectomy. Even though I’ve been able to keep everything calm with the continuous birth control and diet changes, my doctor did let me know it isn’t a permanent fix, and said I will most likely be heading down that path as well eventually. From what I’ve heard from other women in the same situation, the life changes as a result of the hysterectomy don’t compare to the pain of these diseases. Of course, I can’t speak from experience on that. If you do have the surgery, I’d love to hear how you are doing afterward if you feel comfortable coming back to share your experience. I wish you all the best and a pain-free future! Good luck to you!
REPLY
Christina May 27, 2019 at 6:57 am(Edit)
I thought I was alone! I have been diagnosed with all three after having an ectopic pregnancy, and being diagnosed with infertility at age 27, almost two years ago. After what felt like 5 million tests/exams/ultrasounds/and procedures, I found out that my left Fallopian tube is completely closed and my right tube is 95% closed. I am scheduled for surgery to help unblock my tubes and remove the endo. I am in constant pain, and I feel like all I do is say “I don’t feel good”. I was researching correlations between all three and found one scientific journal that talks about endometriosis of the bowel, and I couldn’t get over how accurately it described my life. Not much research has been done on this however and most women won’t be accurately diagnosed due to lack of information. I have been bounced back and forth between my family doctor, Gyno, and gastro doctors. Although having all three of these beasts is the absolute worst, it is comforting to know when hat I am not alone. I would love to chat if you have time to compare stories and share success!
REPLY
Sherri May 27, 2019 at 9:27 pm(Edit)
Hi Christina! Thanks so much for stopping by and sharing your experience! I wish you luck with your upcoming surgery! I would love to talk with you…I’ll send you a private message to your email address…talk soon! 🙂
REPLY
Eva April 01, 2019 at 6:54 pm(Edit)
I have just recently been diagnosed with Adenomyosis after bleeding for 10 weeks (still am). I’m hoping to try and improve things through diet until I can see my specialist. If you know of any good websites etc I’d be forever grateful xx
REPLY
Sherri April 02, 2019 at 12:02 pm(Edit)
Oh, I am so sorry, Eva! I’ve noticed that there is not much information on diet for adenomyosis specifically, but rather more on endometriosis. However, I did find this article that talks about diet changes in section 4: https://draxe.com/adenomyosis/. I also found this one on endometriosis: https://www.medicalnewstoday.com/articles/321471.php that has similar suggestions. For me personally, cutting out refined sugars and wheat helped significantly. I’ve also recently started a predominately plant-based diet, which has seemed to improve my health overall. I hope you are able to see your specialist soon and can get some relief. Wishing you all the best! 🙂
REPLY
Karen August 26, 2018 at 4:11 pm(Edit)
Hello.. update! I am a little over 2 weeks post op from my Total DaVinci assisted hysterectomy and I’m great. No IBS, no more cramping with a BM. I was only on Percocet for 24 hours, then Tylenol. I did have some urinary retention which they attributed to the anti-nausea patch. When it was removed, I was able to go. I am cleared for light lifting and exercise. The worst part of this experience was worrying that I wouldn’t make it through surgery and the urinary retention.
Good luck to all women out there! I have no pain at all!
REPLY
Sherri August 27, 2018 at 8:23 am(Edit)
Hi Karen! I am so glad you are doing well and that your surgery was successful! And, I am so happy for you that you are no longer in pain! Thank you for coming back to share your experience. Best wishes to you! 🙂
REPLY
Karen August 07, 2018 at 8:00 am(Edit)
Hello! Yes yes and yes. I have also been diagnosed with all three of those nasty things and the IBS has become a daily event unfortunately. Crawling on my hands and knees to the bathroom during my cycle to get to the bathroom is not uncommon for me. My total hysterectomy is tomorrow morning by robot. I am 50 years old, getting iron infusions since 2017 so I really can’t continue that much longer. This has been debilitating for me and I just wish I had done something about it sooner. I was busy raising kids, caring for aging parents and putting myself last but now I’m in danger of losing my uterer as it is overgrown with endometriosis. So we’ll see what happens tomorrow. Good luck to everyone out there and if anyone would like to email me more about this issue please do. Kindest Regards!
REPLY
Sherri August 07, 2018 at 11:59 am(Edit)
Hi Karen! Thanks so much for sharing your story! I hope you will come back and let us know how you are doing. I wish you the best for your surgery tomorrow and your recovery. 🙂
REPLY
Theo June 17, 2018 at 5:50 am(Edit)
Hey Sherri,
I am not sure how long ago this post was, as it was not dated but I hope you feel better and the pills are working for you.
I also have Endometriosis and Adenomyosis, and today, my doctor told me I may have IBS as well. I keep throwing up everything that goes into my belly, and I alternate between constipation and diarrhea. It’s a ridiculous existence.
I recently went back on the Mirena to help with the Adenomyosis which seems to have worsened since the last TVS. Sigh
I am so glad you have two angels and a husband! I pray I am as blessed.
REPLY
Sherri June 17, 2018 at 8:21 pm(Edit)
Hi Theo! Thanks so much! This happened in early 2017 and I have to say that I am feeling soooo much better. In addition to the medication, I also gave up refined sugar and wheat which has helped both regulate hormones and manage the stomach issues. But I have to say that not having a monthly cycle has changed everything, once we were able to determine the right dose of estrogen. I hope the Mirena will help you and you will feel better soon! Feel free to reach out whenever you want! I wish you the best!
REPLY
Bobbi January 15, 2018 at 1:04 pm(Edit)
Hiya Sherri so sorry to hear this news. Hey lets touch base I have a friend who had the very same diagnosis. Take Care of yourself. and maybe we can get you guys to connect.
REPLY
Sherri January 18, 2018 at 7:45 am(Edit)
Thanks so much! Yes, that would be great! I hope your friend is feeling well!
REPLY
Dawn March 12, 2017 at 10:01 am(Edit)
I have never gone through anything like this, but it sounds awful. I hope you are doing better! And yes I was wondering why you weren’t posting. Take care!
REPLY
Sherri March 13, 2017 at 11:40 am(Edit)
Thanks Dawn; I appreciate it! 🙂
REPLY
Lori March 11, 2017 at 10:48 pm(Edit)
I suffered from severe endometriosis that was undiagnosed. I did Danocrine for a year and it grew silently. Went through multiple laser surgeries and Lupron treatments. I ended up with a full hysterectomy at the age of 35! I completely understand the emotional rollercoaster and the toll it takes.
REPLY
Sherri March 13, 2017 at 11:39 am(Edit)
Wow, Lori; thanks for sharing your story! Hope you are feeling better now. Take care!