During my endometriosis journey of the last 22 years, I have seen more than 40 doctors and specialists, including three naturopaths. I have come to realize that I have to be an advocate for my own health. If I don’t agree with the doctor’s suggestion or diagnosis, I get a second or third opinion. Here is my experience with medical and naturopathic physicians.
Early Menstrual Pain and Endometriosis
I began seeing doctors when I was 13 years old. I always went alone to the appointments. I guess I saw too many different doctors for anyone to come with me and support me. They thought I was just a hypochondriac.
For years, test after test showed nothing but mild scoliosis and thoracic outlet syndrome; they told me it was all in my head and that I should accept it and take antidepressants. I had doctors talk to me like I was an idiot and prescribe medications for conditions I clearly did not have. One doctor told me that he couldn’t be my doctor anymore because I cried too much. Several doctors embarrassed me in front of other patients because they were frustrated that my body was in so much pain and couldn’t figure out why. Twenty–two years later, I was diagnosed with stage IV endometriosis, proof that the pain was real.
Alternative Care
Frustrated with medical doctors, I went to a naturopath doctor that was hours away. I just wanted to see if she could find something the other doctors could not. She asked me to lie down on my back and then she walked around me, touched my arms, looked into my eyes. The rest I really can’t remember, it was long ago. The interesting thing was, without any tests, she said I had an overabundance of yeast and that my stomach was out of place. Then she moved it back into place! I swear it was so strange because for the first time I felt that I could breathe. It no longer felt as if someone was sitting on top of my chest. She told me to do a yeast free diet along with eating raw pumpkin seeds and some other items as well. It was an interesting visit. Later I found out that my stomach had been out of place. Scar tissue from the endometriosis pulled it out of place.
In 2009 I went to see a dietician. After a long interview, she said I had hypoglycemia, bone loss, and adrenal fatigue. This again is something that I would remember later on, as I put the pieces of my illness together. Because I was on Lupron, I have osteoporosis in my jaw. It is possible that the Lupron and the suppression of all the estrogens have caused serious bone loss elsewhere in my body. No one had considered sending me to get a recent bone scan. My last one was 12 years ago, so at my next GP appointment I will be asking for one.
In 2011, I went to another naturopath. She said I had food intolerances to wheat, dairy and spelt and that my body was not absorbing any nutrients, minerals or vitamins. She put me on a load of supplements to get my body going and for a time, it was working. While on the diet I had more energy, I was more alert and over all I felt great. Then I was put on Amitriptyline for nerve pain from the endometriosis and everything fell apart. The Amitriptyline made me feel groggy, crave junk food and I didn’t want to do anything. It was almost like the medication was making me depressed. I was on 70mg a night. The one good thing it did was help me sleep, something I have needed for years.
Back to a Medical Doctor
In 2012, I went to one of the best doctors of Canada. He pulled all of my files from all the doctors I had seen over the years. His office sent me a copy of everything. This was the first time I had access to all of my medical records. At least half the information in my file was wrong. (Ladies request your medical files!) Much of the information was new – tests that had not been ordered but that were in my file anyway, notes to disregard anything that anyone other than a medical doctor had told me. From these files, I learned that I must take all of my files with me and make notes. Otherwise, there is no guarantee the information will be accurate. If it hadn’t been for my persistence to research and find one of the best doctors for endometriosis, I wouldn’t be writing this article as we speak.
All in all, the Naturopathic doctors made me feel better and talked to me like a human being, while many of the medical doctors treated me like a piece of garbage, humiliated me and made me feel like I was crazy. I wasn’t crazy. The five hours of surgery to remove and repair the endometriosis damaged organs proved the pain was real. It had a cause.
Where I Stand Now
After years of suffering with endometriosis and being ignored and humiliated by medical doctors, it is difficult for me to listen to their advice. The errors and comments in my medical files showed a blatant disregard for my health. Many of my doctors thought I was crazy or faking it. I feel that I have wasted most of my life in and out of doctors’ offices. It was only through my persistence that I found the one doctor who was able to diagnose my endometriosis.
For now, I have decided to still take my birth control pills for my endometriosis – they seem to work. At least, the pills even out my moods. Eventually, I would like to come off of the pill and my other medications. As for everything else, it’s all natural and clean eating for me. I am also learning how to manage stress. Unless I am dying or I feel it’s 100% needed, I will never see a doctor again.
Have you had a similar experience? How long did it take to find your endometriosis? Share your story so that other women don’t have to suffer.
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i have endometriosis in both ovaries, 3 cm and 6cm. i dont want to undergo surgery coz they say endo will just come back. what are the best foods i have to eat?
If you have an Endometriosis specialist you will get relief. Will you be cured? No but you may not have anymore pain after that surgery. There are many things that you can do to help with symptoms like diet. Not eating Gluten, Dairy, sugar etc. If you google Endo diet you will be able to find more information out there. Not everyone feels relief with change of diet.
You have two cysts which I am assuming are blood filled. Having these cysts are an indicator of moderate to severe disease which could get worse. If they are blood filled they will not disappear. You need them removed.
My best advice is to please find an Endometriosis specialist in your area to excise the disease from the root. This is imperative. Make this surgery count by having it with the best of the best as it is the gold standard treatment for this disease.
Stacey I can only give you one piece of advice and that would be go with the specialist right from the beginning. Don’t let anyone else do a surgery on you unless its someone who excises Endo. You would want them to diagnose you not another surgeon. It is imperative that your first surgery be done by the best and by excision. There are many women who have had theirs diagnosed and had laser used on them most of the time and some of these women have had over 20+ surgeries.
This is your body and you want it done right the first time.
Nancy,
Thank you. First I will find a Doc that can diagnose endo. Then if I do have it. I will contact this Doc in WA..
Juliana where do you live? we can try to find a true specialist in endo near you. It would be good to start her care with s true specialist rather than go through many ineffective options before finally getting into the hands of specialists
Stacey teh closest excision specialist to Billings would be Cindy Mosbrucker in Tacoma/Gig Harbor Washington. She spent two years with Dr Redwine and is an excellent excision surgeon
Angela,
I’ve trying to find a DR that can diagnose endo..but I can’t get in anytime soon. Should I just go to the emergency room.
Angela,
I have the report from my CT abdomen/Pelvis w/ contrast. Says its physiologic cyst on left ovary. I also just looked over my Pap test report and it says other conditions–Endometrial cells (in a women 40 years of age or greater) Blood present.
Report Comment–Endometrial cells in a woman age 40 or greater, particularly out of phase or after menopause, may be associated with benign endometrium, hormonal alterations, and less commonly, endometrial/Uterine Abnormalities. Recommend review of patient history to correlate clinically. I feel like an idiot!
There are many different cysts that are benign and it doesn’t matter if they are benign most of them have to come out due to what they are and how big it is.
Endometriomas are blood filled. It is filled with toxic fluid and if bursts it could be extremely painful and will leak everywhere and spread. This type of cyst will not shrink.
Same with a dermoid. Those are filled with particles of hair, teeth etc really gross but still they can’t just stay there they are usually surgically removed.
Same with Fibroids.
Functional cysts will resolve on their own or sometimes with the push of a BCP to shrink it.
The ultrasound report will tell you what kind of cyst they think it is as well as an Ultrasound report.
Mine was first diagnosed as a 10cm complex cyst or possible Endometrioma.
They could not distinguish between the 2 because there was some solid parts but in the end it was actually part of my uterus and was a 5cm Endometrioma in my ovary wrapped around the back of my uterus making it look bigger than it was. That is why you need to keep everything in case something is missed.
Angela, I haven’t heard back yet about the cyst. I will request the MRI that detected this cyst. Which is supposedly a benign cyst that will resolve itself. How can they tell what kind of cyst it is with an MRI and if its blood filled? What kind of test will tell exactly what kind of cyst it is.
Thank you so much!
One that excises (cuts out) Endo. You have a less chance of scar tissue forming that way or not as much as laser would be.
Laser is a tool, not a method. It can and is used to safely and successfully excise. What is important is not the tool used, but the skill of the surgeon wielding it and the method by which they treat the disease. What should be avoided is laser ablation or vaporization; sadly, most obgyn generalists do use the laser for this, which leads to untreated disease. Be sure to question your surgeon’s intended approach.
Endometrioma that is an indication of Moderate to severe Endo
Not always. Recent data reflect that endometriomas do not necessarily represent more severe disease; likewise, nor does absence of endometriomas preclude deeply infiltrating disease (Banerjee, Setala, et al).
As correctly stated, care by an endometriosis specialist who has an extensive history of effectively treating the disease can partner with his or her patient to come up with the best plan for that individual. Good luck to you and best wishes.
If the cyst is an Endometrioma (Blood filled) it will need to be removed there is no way to shrink that with medication.
I would make sure you ask for a copy of the report for that and for now on. It is good to keep all copies of tests and procedures.
If you go to an Endo specialist that will be your best bet. One that excises (cuts out) Endo. You have a less chance of scar tissue forming that way or not as much as laser would be.
If it is an Endometrioma that is an indication of Moderate to severe Endo so you would definitely want to remove all the Endo and cysts.
They might try you on Lupron, or another period, ovulation suppression med like the Birth control taken every day continuously.
Depending on what type of cyst it is really matters on what you do going forward.
Angela, thank you for your response. I don’t recall the name of the cyst. I have just left message with my ND and requested the name and that I want to set up a Laparoscopy and that I need the name of the Cyst.
So if I do this procedure and find out I have endo. What can I do about it without having surgery, which doesn’t seem to work and makes things worse causing adhesions and such?
Thank you!
Stacey,
The only way to rule out Endo is through laparoscopic surgery, and if you are in that much pain and everything is negative there is a good chance you do have it.
It will not show up on a pap, CT scan or Ultrasound.
What type of cyst did they say it was?
Thank you for answering. I live in Billings, Montana.
Stacey, where do you live? I would like to see you get a second opinion from a true endo specialist. There are very few who can effectively treat endo, but will try to locate one for you if you let me know where you live.
Endometriosis needs to be treated with excision, and not very many gyns in teh US do excision well. There is a core of these docs available around the country. It is worth a second opinion visit at least. I had a complete hyst at age 27, then spent 22 more years in pain without knowing I still had endo. After I began working with women with endo in 1986, after listening to their stories, I began to suspect I still had endo. I sought help from an excision doctor and have been pain free since
Im 48 years old. I have been seeing a ND for 7 months. Was having severe cramping, constipation,fatigue,nausea, vomiting and began rapid weight loss. I have lost 70lbs in these 7 months. ND gave me ALCAT and my yeast was in 700’s
So I have Candida. Had colonoscopy and endoscopy nothing found. Still continued having menstrual like cramps. Plus literally feels like a bat being pushed into rectum. Terrible pain. Had MRI and found benign cyst on ovary. ND said this was normal and should resolve itself. Last month the cramps came when I was ovulating. This month my period which is always on day 27 is 3 days late. I have severe cramping for the last seven days. They come and go every 3 to 4 hours around the clock. I have constipation and have been using enemas every other day. I have been eating what I’m supposed to so it’s not that! Eating ibuprofen like candy and it barely helps. Could this be endo. I thought endo showed up in Pap smear. Thought we eliminated this until sister told me about a friend with similar symptoms. I’ve been searching net now for endo and found it can only be found by Lapo. Why has my ND ruled this out? Which I will ask her first thing Monday Morning. I’m so over this and I really do not want to go to medical doc. There horrible!! Do no harm my $&; please help!!
I’ve recently been diagnosed with endometriosis earlier this year. I’m currently on a 3 month lupron injection which I don’t feel is helping me. My doctor is not very informative and I feel I’m not receiving the care I deserve. I’m currently seeking out naturopathic doctors to find some relief and get off of medication and pain killers.
Was she diagnosed through laparoscopy or did the doctor say that she might have it?
Please let me know if it was surgically diagnosed, what they found and if excision or laser surgery was done.
My teenage daughter has endometrosis. Nrrd moreinformation pls.