An Endometriosis Update

Endo WomanI wanted to post an update to my Endometriosis journey today.  I'm motivated to do this for several reasons.  One is that Endo. is not very well understood & I thought an update would also give me the opportunity to educate a bit on this disease.  Two, my approach to dealing with Endo. is changing & I want to share that with my readers, many of whom are also battling with this painful condition.  And finally, I just want to reach out again.  So much about autoimmunity is lonely & I have a strong desire to help others feel less alone.  You can read Part 1 & Part 2 of my Endometriosis story here & here.

I was diagnosed with Endometriosis in March of 2010, after undergoing laproscopic surgery.  Endo. can often be suggested by a person's health history & pelvic exams or imaging, but it cannot be confirmed without laproscopy.  Laproscopy is when small incisions are made in the navel & sometimes other spots on the abdomen, so that a very small fiberoptic camera can be inserted into the body.  This  camera allows a doctor to visually confirm Endo. & in most cases remove as much of the endometrial tissue, scar tissue, & adhesions as possible.  Biopsied tissue is used to verify the diagnosis.

Based on this procedure, a doctor will then stage the Endo., with Stage 1 being minimal & Stage 4 being extensive.  The stages refer to how much scarring & diseased tissue is found, but does not necessarily reflect how much pain a women is in with the condition.  A women with Stage 4 may not be in severe pain, while a women in Stage 1 may find her monthly cycle intolerable & debilitating.  Staging is important, because it determines alot about treatment post-surgery.  For instance, Stage 4 will usually require some treatment with hormonal medications & if the woman is trying to become pregnant, IVF may be the best way forward at that point.

After my surgery in 2010 I was told I had Stage 4 Endometriosis.  It was found on & around most of my pelvic organs, had caused adhesion between my uterus and other organs & had been found wrapped around my bowel.  I had been in intense cyclic pain prior to the surgery & had a great deal of relief after the procedure.  It was recommended that I take low-dose birth control continuously at that point to help prevent future endometrial implants.  Endo. is a progressive disease, meaning it normally gets worse over time & it can return after surgery.  Hormonal treatements are used, because Endo. is driven by estrogen.

Endometriosis is not considered by all in the medical field as an autoimmune disease.  However, as I tell fans on my FB page all the time . . . "if it quacks like a duck."  There is strong evidence that autoimmunity is at very least a part of the process.  It is also often associated with other AIs, like Celiac, thyroid disorders, etc.  Further, there is a genetic link; a woman who's mother has Endo. has seven times more risk of developing it herself.  Many women in my family have Endo.

After my surgery, I did take BC pills continuously.  At the time I did not know about dietary interventions, like AIP, & frankly, I was scared & stressed.  I did not want to be looking at repeat surgery a year or two later.  This treatment did work well for me.  I was relatively pain free for about a year, but I then began having complications from long-term pill use (BC can contribute to leaky gut) & still undiagnosed Celiac.  I spoke to my gynecologist in 2012, shortly after my Celiac diagnosis, & then stopped the pills abruptly when I started AIP.

Despite starting my menstrual cycle again & not having the hormone regulation of the pill, my periods remained really manageable initially.  I attribute this entirely to AIP.  There is lots of evidence that low-inflammatory diets are very useful for women battling Endo.  During this time, I also made an attempt to use Calcium D-Glucarate, with the guidance of my functional medicine doc, to encourage faster estrogen detox in my body, since Endo. is estrogen driven.  Unfortunately, it did not work well for me.

Then, starting about a year ago, the pain started to creep back in with each cycle.  I was normally able to still function just fine, but I had to take one dose of Tylenol on the first day & use heating pads.  Compared to pre-AIP, pre-surgery this was nothing!  However, I normally do not take any OTC medications with AIP, so I was concerned that the disease was progressing.

In January, I realized that there were signs that Endometriosis may be affecting my bowel again.  I saw both my gynecologist & my GI specialist & it was agreed by all to monitor things for three more cycles.  It is now very clear that Endo. is either on or in my colon wall.  I have decided to consult with three different, very skilled gynecological surgeons & will try to determine over the next few months if I must have a second surgery or if hormonal treatment is necessary to shrink the implants & possibly avoid such a high-risk procedure near the bowel.

Endometriosis can form almost anywhere in the body, it can even affect the diaphragm, lungs, &, though rarely, the brain.  It is because I know that it is progressing & because I am aware of all the other areas of my body that could potentially be impacted that I have decided to move forward with possible surgical or hormonal (or both) treatments.  Although methods like these are not my preference when managing autoimmunity, I am aware of the limits of diet & lifestyle.  After two years of AIP & no hormone intervention, I need to seek out new ways to manage Endo.  While my pain is still very well controlled with AIP, the spread of endometrial implants in my body is something I want to do my best to prevent.  I also want to preserve my organs, so treating sooner & hopefully avoiding drastic measures, like hysterectomy or bowel resectioning,  is my number one goal.

If you are one of the many women out there that are dealing with Endometriosis I want to give you hope that dietary changes, like AIP, can have an immense impact.  My place at this stage of my journey should not discourage you from using this powerful tool in your AI management arsenal.  My pain is not even in the same ball park . . . heck the same continent, that it was before.  You very well could find the same relief with this very gentle, very safe approach.  On the other hand, if you've used diet changes, but are finding that other options are necessary, like I have, don't feel ashamed of all your dietary efforts.  I'm definitely not "quitting" AutoImmune Protocol & I know that I took Endo. healing as far as possible with food.  In fact, all that diet work is very likely going to help my next steps go so, so much more smoothly than they would have otherwise.

There are tons of great resources on the web about Endo. & they were my sources in writing this post.  I like:  Endometriosis Resolved, Endometriosis.Org, & The Endometriosis Association (to name a few).

How do currently manage your Endometriosis?  Have you ever considered a long term plan that includes surgery or medication, in addition to diet & lifestyle changes?  I would love to hear about your experiences.

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12 thoughts on “An Endometriosis Update

  1. Alice

    Angie, I'm sorry to hear that you have to deal with this, but I know and you know that you can. I was never given a formal diagnosis of Endo, but knowing the symptoms (now) and having my doctor tell me at the age of 20 that if I wanted children I had to start right away, I'm pretty sure I had it. My periods were intensely painful and extremely irregular, heavy and irregular until after the birth of my 3rd child , when I had a D&C because of a retained placenta. After that there was an improvement, but I was really happy to have menopause put a stop to all that:). Now I just have fibro, diabetes and depression to manage, and when I'm strict with the diet it does help. And so does working in my garden and enjoying the sunshine when we have it, which is what I'm going to go do right now!

  2. Ashley

    I'm so sorry and feel the pain. When I was 16, (1998) I was put on birth control due to extreme pain, nausea,vomiting, cramping, migraines during my mental cycle. Before they started regularly diagnosing endo. I missed a lot of shool. Since, I've been on birth control of and on and continued the research and knew I had it. June 2009 I had my first surgery. Manly found on my uterous and colon, and intestines. Started birth control again. Fast forward, my hormone levels dropped and so did my b12. I found one article long ten use of birth control can cause absorbtion issues, but then celiacs runs in my family. The past two years, I've been switching to paleo driven lifestyle, although have my downs. 2013, I was having more pain while still on birth control and had my second removal surgery, not nearly as bad. However, now I'm 30, my hormones need to get back in checkin order to get pregnant. From my last surgery, the ovaries look fine from the outside. Have not scoped from the inside to check, I'll consider if any issues with conceiving. Not sure I'll go back on birth control or not. It was to the point that the day of my placebo, I'd cry for no reason every time. Total loss of sex drive. So my doctor, said, cycle once to twice a year. No sex drive period. So, I'm doing paleo, been reading on inflammatory foods to avoid,foods i need for other healing, foods to avoid for celiacs. And giving up on birth control, hoping that getting pregnant will by me done time for non hormonal options.

    1. Angie Alt

      Post author

      Thanks Eileen! Right back at you! As to being open . . . I think too many women are quiet about this disease, because periods are "personal." Periods are a normal, healthy part of female life though & more of us need to speak up so that when something has gone wrong it is identified earlier & women get the help & support they need. I'm on a mission lady!! LOL!

  3. Nicole

    Thank you for sharing your journey - I have never had a formal Endo diagnosis, but my functional medicine Doc is pretty certain that I have due to the severity of my symptoms and family history. I have been strict Paleo for about a year, which definitely improved things, but the last few months I have had had pain creeping back in, along with cyclic fever/sweats/chills and excruciating cramps. I am considering AIP now - I feel like its a massive commitment, but I don't want to go down the surgery route unless I absolutely have to so I think I will give it a try.
    I wish you all the best with your healing, and hope you are feeling better again soon 🙂

    1. Angie Alt

      Post author

      Nicole, thanks for reading! I used to have the same symptoms you have mentioned. The first day or two of my cycle was like getting the flu. I fainted on several occassions & went through the fever & sweats too. I have not had any of that in years, thanks to AIP. Although I need to explore the next best steps considering that it seems to have spread to my bowel again, I think AIP has been HUGE in terms of pain & other symptoms. I would definitely consider it as your first step. 😉

  4. Hi there! Just wanted to thank you for sharing your story and being honest about your decisions for treatment. I was recently diagnosed with Endo, stage 2 via laparoscopy. Since feeling like my paleo diet wasn't doing enough, I've been on a mission to find more information on healing it naturally and it's been so frustrating how little good info is out there! I did want to share a site that I've found really helpful: Mel, who runs the site, is amazing and gives the run down on about every different natural treatment option available and her thoughts and experiences with them. Personally, I have been managing it with chinese medicine and acu with great success so far. Also do maca, DIM, calcium d-glucarate, and lots of systemic enzymes to moderate inflammation. I was enlightened by your inclination toward calling it an auto-immune disorder though--I had never put that together! I'm writing up on my experience with Endo soon on my blog and will be sharing a link to your experiences here. Best of luck in deciding whether or not to do HRT going forward! <3

    1. Thank you so much for recommending my site Angela 🙂
      I am so happy my journey and getting to a place of being pain free of Endometriosis has helped other women from around the world!

  5. Annette

    Hi Angie,
    I'm so sorry! I know what you're going through!
    I've been battling Endometriosis and Hashimoto for about 8 years now .
    After 2 laparoscopies, and terrible pain it took me about 4 years to reverse the symptoms of endometriosis by changing my lifestyle and diet. Of course I don't know what's happening inside me, but at least I'm pain free. I'm currently working on my Hashimoto and Adrenal fatigue - wish me luck!

  6. Sasha

    Thanks so much for sharing your story, Angie. I had surgery for Stage IV Endo 18 months ago and it has already grown back to almost the same levels (of both endo tissue and pain) as before surgery. I have been all organic, gluten-free, etc for years but after a new diagnosis last month of endometrial hyperplasia I have decided to try the A I Protocol. I am wondering if you think it is safe to have red meat and pork, which are frequently included in the AIP, even though they are often discouraged for women with Endo. Thanks in advance for any thoughts you have!

    1. Angie Alt

      Post author

      Sasha, I eat both frequently, but I focus on organic, grass-fed sources. I think if you aim for high-quality w/ these meats as often as your budget will allow, you'll be okay.

  7. Jada

    I'm curious how adenomyosis relates to endo? I've been diagnosed with adenomyosis so from what I gather it's similar to endo but grow inside the uterine wall, not on the outside. I get right pelvic pain on about day 3 of my cycle and the pain varies each period. My last period it was horrible for about 4 days. I'm not finding much info on adenomyosis. Concerned it will progress.


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