Home Forums General Discussion Endometriosis & RA

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  • #306870
    Valsmum
    Participant

    If anyone has RA and endometriosis I would like to know if after having a surgery to remove some of the endometriosis if you felt better. I had a hysterctomy because I had adenomyosis and severe anemia,but when the report came back it showed I had endometriosis all over the outside of my utereus. If the pain in my lower back, and down my legs doesn’t go away I may have to go back to surgery to get rid of the remaining endo inside that could be on other things like my colon & bladder etc.

    If you could share your experience with endo I would greatly appreciate it. I don’t know what is causing the pain that goes down my legs and in my hip-pelvic region, all this time I thought it was RA, it might be endo?. I had my RA dxs first so I thought pain in the low back and legs was RA, now I ‘m thinking it might be endo and there is a chance I could get rid of some of the pain I am expereincing. I also read a lady that stopped eating sugar, dairy, wheat and meat got rid of her endometriosis with diet. Giving up sugar would be really hard for me.I might try it becasue the days I avoid sugar I do feel better,but boy desserts are so tempting, fruit will have to do the trick. 🙂

    #364201
    cavalier
    Participant

    I cant comment if my leg issues are endo – or Scleroderma or Lyme – I just know I have much of these same issues. However, with that said I had extensive endomet. removed including outside my uterus off my intestines & liver in scattered sites – I had no issues back then in ’91 when I had this removed with my legs. At least my doc took a look to explore and am glad he did. In 2002 I started having trouble with my legs in this manner so I have never thought of this as being endo. I did keep my hormones thru one tube the other was vested in scar tissue.
    Of course over time those hormones waned.

    There is a increased risk when someone has endometriosis for other “autoimmune diseases” and they have done studies on this now considering Endometrisosis as being a autoimmune disease in making antibodies – i suspect the clamydia infection which is rampant in the human population & is transmitted sexually as being a player – it is now known that cervical cancer is from this bacteria which of course ca be involved with other bacterias or problematic long term in other ways in the body. I think much will be known in the future like cancer also inflammatory will be found to have various bacterias involved. Much we blamed on genetics is simple common bacterias & viruses undetected at work – allowing many various expressions of diseases.

    If i may suggest a doc doing a bacteria testing for mycoplasmas & clamydia & various strepto bugs. There is info on here of a lab in Maryland who specializes in these tests – that a doc can send blood too – the results are not always fast but this may give you some clues – is worth ruling in or out in my opinion – especially with RA in the mix too.
    Best – Jill SD & Lyme

    #364202
    Valsmum
    Participant

    Thank you for your ideas, I have been tested for all three bacterias you recommended and the strep is the only positive one out of the three, so I will look into that again;It is a good idea, thank you.
    I found a sugar, dairy, and wheat-free endometriosis diet I would like to try before another surgery.

    You’re right it does make sense these things go together and it does sound like autoimmune-ish.I read about women that were infertile improving their diet and got better. In the back of my mind I keep thinking what my family has said for a long time, sugar is a poison.Maybe with out it my symtptoms will improve. Thanks again.

    #364203
    lynnie_sydney
    Participant

    My Mother (who had Palindromic RA which first manifested after giving birth to me with RA adding to the mix in her mid 60’s) had endometriosis and had a hysterectomy at age 39. She was put onto estrogen replacement by her female gynaecologist and told never to stop taking it, whatever the pressures from other Doctors. Her GP hounded her for many years to stop taking it. Dont know whether this had any effect, but her RA spiralled out of control in her mid 60’s when she did eventually stop the estrogen replacement. She is in the UK and has taken the traditional route of treatment – methotrexate and prednisolone.

    There is a increased risk when someone has endometriosis for other “autoimmune diseases” and they have done studies on this now considering Endometrisosis as being a autoimmune disease in making antibodies – i suspect the clamydia infection which is rampant in the human population & is transmitted sexually as being a player – it is now known that cervical cancer is from this bacteria which of course ca be involved with other bacterias or problematic long term in other ways in the body

    Just want to comment on the above. I am not sure about the endometriosis now being considered an autoimmune disease, interesting finding if so.
    In terms of cervical cancer, it is caused by the Human Papiloma Virus (HPV) not a bacteria. And Chlamydia is not always transmitted sexually. In fact, the version that is implicated in MS and various autoimmune diseases is Chlamydia Pneumoniae (CPn)- a bacterium that causes atypical pneumonia, pharangytis and bronchitis. It is a very complex bacterium which requires another cell to re-produce and its genome sequence wasnt published until 1999. It also stays in the system and can cause recurrent bouts of illness. Interestingly, my Mother was hospitalised at age 4 for 9 months with severe pneumonia (possibly CPn). I also had severe pneumonia at age 13 and none of the antibiotics then on the market seemed to work (they did not yet have one to treat CPn). CPn has now been picked up as one of my chronic pathogens.

    Be well! Lynnie

    Palindromic RA 30 yrs (Chronic Lyme?)
    Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
    rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
    Diet: no gluten, dairy, sulphites, low salicylates
    Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)

    #364200
    cavalier
    Participant

    Lynne – thanks yes Clamydia is a virus I’ve been really tired as of late and the CPN has nothing to do with sex I had a bad case of Pneumonia one year after my Partial hysterectomy in 91 – I feel if I ever get the results from my mycoplasma testing back there maybe the CPN still circulating.

    Couple of links for you below – there are tons more out on the net in regard to increased autoimmune like diseases when a woman has endometriosis – they knew of this as early as 84 but my doc in 91 ever mentioned a word – when my hormones waned from my one tube i had left – there was no estrogen so it could be in part not helped by lack of hormones in my case & I do feel hormone testing is of value to find if there are imbalances I do take bioidentical hormones now as I feel it is one more piece in covering the bases against inflammatory conditions & diseases along with AP & other means. While I do believe a antiinflammatory diet makes a difference, once things have flared to that point it may take that plus other means but certainly is one of the players. I wonder if the peptide injections (amino acids) would be of help – by one of the alternative MD’s who offer them since it is highly likely it is a inflammatory component – certainly there is for RA. I think anything that helps the immune system modulate & is working towards lowering inflammation without suppressing the immune is a consideration,

    In 91, I was 37 in reference to Lynn’s Mom. Ouch as folks can add. I just recently was given the grace to see another B-day pass & I think for all of us who have various issues that is a milemarker we want to see.

    http://www.endo-resolved.com/autoimmune.html
    http://suite101.com/article/autoimmune-endometriosis-a69459

    Endometriosis is a burgar simply put as is many of the inflammatory conditions – I hope you can get complete resolution. At least more is being talked about today in diet, AP etc than yr’s ago. That is the good thing the internet has done.
    Jill SD & Lyme

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