Endometriosis Support Group
Endometriosis is a common medical condition where the tissue lining the uterus is found outside of the uterus, typically affecting other organs in the pelvis. The condition can lead to serious health problems, primarily pain and infertility. A major symptom of endometriosis is pain, mostly in the lower abdomen, lower back, and pelvic area.
I"m sooo sick of endo and don't know what to do anymore!!! I have done everything under the sun and nothing seems to be working. I have detoxed my home of toxic chemicals. So now we only use organic and natural soaps and cleaners etc.
I have also detoxed my beauty routine so all of my makeup, lotions, etc are all organic and contain no unnatural synthetic or carcinogenic ingredients.
I have tried massage therapy and reflexology and those have worked relativity well, but since they are not covered by ins its hard to scrape the money to get them done.
Due to my insurance I was only allowed 2 visits with a pelvic floor specialist, so I try to remember to do everything that she taught me and plus I also do some gentle yoga to help the pain, relax any tight muscles and move out any congestion in my lower abdomen.
I have revamped my diet. I'm 90% gluten free, eat very little dairy and mostly eat a veggie based diet. Everything is organic, meats are grass fed and contain no fillers or sodium nitrates.
I have been taking my meds as instructed. I was on the progestin only Ortho Micronor and it worked like magic. I was on it for a year and got better everyday. I had many pain free days, felt so much better mood wise etc. But to make a long story short I had an ins that has a sexist male in charge and he decided that anything that can be used as a birth control they weren't going to pay for anymore so my ortho was kicked of my plan and I couldn't afford it out of pocket as its almost 500 per month.
I've kept up and maintained every other aspect to keep my endo in check and have tried several other progestin only pills and never got the same result as with the micronor. I'm now on the depo shot and I hate it. The first one worked fine but once that one wore off all I did was bleed for 6 months. They told me to give it one more chance so I did, this time I did stop bleeding for about a month and a half, but now i'm bleeding again kind of heavily and with lots of clotting and have felt nauseated almost every day for 2 weeks.
I had to call out sick today and i'm not happy. I've already miss so much work as I live in New England and we have just been belted with snow storm after snow storm, so now that I have to call in for this, really irritates me.
I'm just so irritated as I've read so many stories of how all these women miraculously cure themselves through diet and clean living and I've done all that and still sick. I also don't understand how one progestin can work for me and 9 others just like it don't work for me at all.
I know that I don't want to do the depo anymore. I hate it and its not working, but the minute I go off any of the progestin only pills my endo comes back really pissed off and in full force, So I don't know what do do anymore. I've done everything I can and I'm running out of med options, so I just don't know what to do. :(
Has anyone else been through this? Any advice on what to do next? I'm so alone and tired of this!!!
I have also detoxed my beauty routine so all of my makeup, lotions, etc are all organic and contain no unnatural synthetic or carcinogenic ingredients.
I have tried massage therapy and reflexology and those have worked relativity well, but since they are not covered by ins its hard to scrape the money to get them done.
Due to my insurance I was only allowed 2 visits with a pelvic floor specialist, so I try to remember to do everything that she taught me and plus I also do some gentle yoga to help the pain, relax any tight muscles and move out any congestion in my lower abdomen.
I have revamped my diet. I'm 90% gluten free, eat very little dairy and mostly eat a veggie based diet. Everything is organic, meats are grass fed and contain no fillers or sodium nitrates.
I have been taking my meds as instructed. I was on the progestin only Ortho Micronor and it worked like magic. I was on it for a year and got better everyday. I had many pain free days, felt so much better mood wise etc. But to make a long story short I had an ins that has a sexist male in charge and he decided that anything that can be used as a birth control they weren't going to pay for anymore so my ortho was kicked of my plan and I couldn't afford it out of pocket as its almost 500 per month.
I've kept up and maintained every other aspect to keep my endo in check and have tried several other progestin only pills and never got the same result as with the micronor. I'm now on the depo shot and I hate it. The first one worked fine but once that one wore off all I did was bleed for 6 months. They told me to give it one more chance so I did, this time I did stop bleeding for about a month and a half, but now i'm bleeding again kind of heavily and with lots of clotting and have felt nauseated almost every day for 2 weeks.
I had to call out sick today and i'm not happy. I've already miss so much work as I live in New England and we have just been belted with snow storm after snow storm, so now that I have to call in for this, really irritates me.
I'm just so irritated as I've read so many stories of how all these women miraculously cure themselves through diet and clean living and I've done all that and still sick. I also don't understand how one progestin can work for me and 9 others just like it don't work for me at all.
I know that I don't want to do the depo anymore. I hate it and its not working, but the minute I go off any of the progestin only pills my endo comes back really pissed off and in full force, So I don't know what do do anymore. I've done everything I can and I'm running out of med options, so I just don't know what to do. :(
Has anyone else been through this? Any advice on what to do next? I'm so alone and tired of this!!!
You live in Maine, which is the home of one of the countries top endo specialists, Dr Robbins.
Dr Robbins has advanced excision skills which is the only way to properly treat endo. When endo is excised it is possible to get relief from symptoms without the use of hormones or other medications.
He also takes insurance. My entire surgery with him and a hospital stay (d/t a bowel resection) was paid for except for my co-insurance and deductible.
Dr Robbins is one of the most caring doctors I have ever met. He worked tirelessly during my 7 hour surgery to correct the damage done by endo. My last surgeon couldn't be bothered to do half as much, and tried to cover up that he missed my bowel endo.
The staff at Maine Medical are also awesome, so caring. This has been a truly positive experience, and I would recommend him to anyone.
I personally think another opinion can't hurt, especially if your insurance will cover him.
Thanks for your support! Sorry it took a bit to write back, but things have been wonky in all areas of life for the past week or so. ugh. Is mercury in retrograde again? lol
Anyway, thanks for the advice VallyWillis. I had no idea that Dr. Robbins was in my state. His office is about a 45 min drive from me and I know where it is located. I'll check into it soon. I do hope that everything went well with the surgery for you and your doing so much better now!
I did see my obgyn last friday and we have sort of a new game plan. He put me back on the progestin pill that worked for me, but unfortunately I have to wait another week or so till the depo is almost out of my system before I can start taking it. So that is one good perk.
I also asked him about this gene that I found out about called the MTHFR gene. I've read in quite a few places that if the MTHFR gene is mutated it can cause auto immune issues such as Endo, food allergies etc. So he is having his office look into it to see if it would be covered by ins to see if I could have the gene testing done. etc
He is also putting me in touch with one of his colleagues in the same office building he's in. She is very into trying to heal yourself by balancing your hormones naturally. I have an apt with her on the 2nd. I'm very curious to see what she has to say. I think she also does hormone tests to see which ones are out of wack as well. I'll let you know how that went.
I'm also going to look into another holistic doc that my step-nana recommended. He has written a book recently and developed a new form of blood testing for insulin and how certain foods react specifically to you. I went to a talk that he did last summer and it was good. He talks about how he has made a specific blood test to see what your allergic to (food wise) and your insulin and how it affects your hypoglycemic levels. He said if your eating the wrong foods then it can cause your hypoglycemic levels to go out of wack also causing auto immune responses such as diabetes, endo, etc. Where he is a holistic doc I have to find out if ins will cover any of this. But really intrigued what he will have to say and what he may find out.
Also massage has been the only thing that has helped with the pain, I have been doing full body and reflexology, which have really helped! I have come across another therapist who strictly does Ancient Myan Abdominal Massage. So I would like to look into seeing her as well, this way I would have some direct concentration of massage on the area. She also teaches you techniques so you can keep up with the practice.
I'm also still fooling around with a few more diet changes and looking into a few other different herbals/vitamins etc.
But mentally starting to feel better and feel like quite a few doors are opening for me now. :)