Endometriosis: It Seems Like I've Tried Everything!
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Anonymous
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I'm 28, unmarried, and without children. I was diagnosed with endometriosis several years ago and my current Gyn recommends that I stay on hormone-based birth control to regulate this condition. There are two associated complications with this: First, I have a heart condition that makes it unsafe for me to ingest the higher levels of estrogen found in standard hormonal birth control, and thus I am limited to "low-dose" hormone methods. Second, I'm very susceptible to many of the side effects common with hormonal BC (bloating, cramping, anxiety, depression) and this has made for a rather frustrating go at trying to find a method that works for my endo AND doesn't make me feel emotionally unstable or bloated and insecure.
Unlike many women suffering with endo, my only symptom is the occurrence of ovarian endometriomas (chocolate cysts). I had an emergency cystectomy in 2009 to remove a nine-pound endometrioma that I was unaware of until it became so large. This was my second major abdominal surgery, and the trauma to my abdomen has caused a lot of scarring; I was warned repeatedly that any further abdominal surgery would come with heightened complications. I currently have another endometrioma growing on my left ovary that has been holding steady at a small enough size that it does not yet need to be removed. Because of my medical history, I'm desperately searching for an endo treatment that does not require surgery. I have tried six or seven hormone prescriptions now and have been dissatisfied with each due to the side effects I experienced, ranging from severe emotional disturbance to physical discomfort. I'm at my wit's end. I've asked my Gyn about the Mirena IUD and she's willing to implant it, even though she is not entirely confident that it will control my endo (the hormone level could be too low). I've done a fair amount of research, especially into homeopathic remedies; I've been taking a daily turmeric supplement for the last nine months. I've also read about the endo diet--can anyone speak from personal experience? Does the diet help to control cyst formation? I'm trying to stay positive and proactive. I think Mirena could be a good solution, so long as I don't experience side effects from the Levonorgestrel (I've tried the minipill and had bad side effects, so I'm nervous at the prospect of going the progestin route again). Has anyone here had a good experience with the IUD, endo diet, or herbal/homeopathic treatments? I would appreciate any advice or suggestions! Thanks for reading what seems like my whole life story! |
Anonymous
| Has your doctor suggested lupron therapy? I hear that it is now a treatment that they are using. |
Anonymous
Yes, I've investigated Lupron. It is a drug that puts the patient into chemically-induced menopause, thereby stopping menstruation and "pausing" the endometriosis condition. Based on my Lupon research, this is a last-ditch effort for women with very severe endometriosis who want to retain the ability to have children naturally. I'm only 28, and the idea of going through a life-altering ordeal like that is just frightening to me. 
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Anonymous
I unerstand completely. I just mention it because when I was getting treated for endo much like yours, they didn't use it. |
Anonymous
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I am so sorry. Like you I have had two surgeries for endometriosis. I was in continuous birth control then the dr prescribed Lupron. The pharmacist told me not to take it. I ended up married and pregnant within a year and a half later. Since child birth no problems what so ever.
Sorry i don't have advice but can relate a tiny bit. Good luck! |
Anonymous
| The only advice I have is, if you're planning to have children in the future, look into freezing some eggs. What if you lose your ovaries due to future cyst removals for example. I'm sorry you're going through this. |
Anonymous
+1 And Lupron was my other suggestion. Sorry, OP. |
Anonymous
| I lost one ovary and tube to an endo cyst many years ago. I did acupuncture as part of my ttc efforts, and was shocked when my monthly killer cramps went away. My fertility dr also recommended taking pycnogonal to reduce the inflammation associated with endo. |
Anonymous
| Exercise (walking 5 miles 5 times a week), high dose Omega 3 and Grape Seed extract helped me. |
Anonymous
| Surgery and the endometriosis diet didn't help very much but having a baby did. This is going to sound like horrible advice but if I were you I would try to have kids in the younger side. Having a baby seems to really help a lot of women. |
Anonymous
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Dear OP - I'm sorry you are struggling with this. I also suffer from terrible endometriosis, and I also get the endometriomas. I also cannot take the combined birth control pills because I am at higher risk of stroke. I bled continuously on the mini-pill, so, like you, I am currently feeling out of options. I have an appointment in a few weeks with my gyn to also talk about the mirena. I don't have much hope for it though.
Years ago (before having children), I did have my endo laparoscopically removed followed by six months of Lupron. I read all the horror stories online about it, but honestly, it was fine (for me). Given what I'm used to dealing with with the endo, Lupron was great! No endo symptoms, no period, no pain. I did experience hot flashes and vaginal dryness, but those were my only complaints. I would totally do it again. Problem is, it's a very temporary solution. Like other PP's pregnancy and breastfeeding gave me relief, but now that I'm done having children, all my endo troubles have grown back. My gyn says I'm too young for a hysterectomy, or I'd give that a try! There is a highly rated doctor in NYC that is known to be an endo expert. His name is Dr. Seckin. Google him. His website is compelling - I've considered going to see him. I'm not much help, but just wanted to let you know I'm in the same boat. It's a scary feeling to feel like we've exhausted all options, yet still are suffering. Let's hope Mirena is the answer. |
Anonymous
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Thanks to everyone for your responses! I too have heard that pregnancy and childbirth helps to "reset" the reproductive organs' functioning, and many women experience relief after having children. Unfortunately, I am single, and furthermore am unsure if I want children. Endometriosis aside, the women in my family have historically had children later in life (my grandmother had my mother at 38, and my aunt at 43--in the 1950s no less! And my mother had my brother and me in her mid-late 30s), and my mother went into menopause in her late 50s, so the genetic/longevity aspect of fertility is in my favor. I have considered being a surrogate, however most agencies require their surrogates to have already successfully carried a pregnancy to term, and I have never even been pregnant.
Pycnogenol is a product I've not heard of--I'm excited to look into it! I've been taking a turmeric supplement for a while now, and will soon start a ginger supplement and omega 3, 6, & 9 supplement. Pycnogenol might be a good addition, along with the endo diet. A large part of the problem is that there is still some confusion about endo, and contradiction within the medical community on how to treat it. At this point, I am very wary of further medical treatment in the form of hormones or Lupron--the horror stories I've read about, plus my own disappointing experience with medical/hormonal treatment is steering me toward dietary and natural treatment. I'm so grateful to web-based communities like this that provide feedback and support! Thanks again! |
Anonymous
| OP, what really helped me was the Endometriosis Diet. It reduces Inflammation and calms the reproductive system. Also, walking/yoga will do tremendous benefits. |
Anonymous
I'm so glad to hear this! I'm going to start the endo diet promptly this weekend! Thanks. |
Anonymous
| As a follow-up: for those of you who have tried the Mirena IUD as a treatment, did you experience any side effects? |