Endometriosis and ME/CFS

[PDXhausted]

Anyone else out there currently taking hormonal birth control to try and shrink an endometrioma and/or endometriosis? I could use a buddy. Started back on the pill last night and am in some serious misery.

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My background, had a cyst rupture back in 2004 which led to a clinical diagnosis of endometriosis and was put on continuous oral contraceptives. Did fine on them, they prevented any more cysts or pain.

Gradually developed ME/CFS while on the pill. ME/CFS became full blown in 2010. Quit pill in 2012 because I suspected it was making ME/CFS worse. Felt tons better off pill, and symptoms became cyclical.

Then in 2013, the cyst ruptures returned, along with what appeared to be a pelvic infection. My ME/CFS symptoms became severe and I became bed bound except for bathroom.

Went on amoxicillin which greatly improved both my pelvic symptoms and overall ME/CFS symptoms. Was able to walk a bit again.

After 6 weeks of amoxicillin, my gut became damaged (likely leaky as well), and my ME/CFS became extremely severe. Fully bed bound, horrible neurological symptoms, severe brain agitation, and fatigue so bad I could barely reach my arm to my nightstand. My husband had to quit work to take full time care of me. Bed pans and feedings. And continued cyst ruptures on top of that.

Equilibrant has been a miracle. After several months of declining in that state, Equilibrant stopped my decline, my fatigue improved, and I regained some muscle function. I can now use a bedside commode without becoming exhausted, and I can feed myself and use my arms slightly more (though am still significantly limited, especially when hormones are high). And it completely stopped my cyst ruptures and pelvic pain.

I was only able to get up to about 3/8 pill of Equilibrant though due to the hormonal effects. At 1/2 pill, I was getting bad psychological PMS symptoms. Also after a couple months on it, I realized I had a large cyst growing, so was cautious about dose.

So after seeing a gynecologist and a gynecological oncologist, and imaging, it was determined that I have 2 very large, probably non-cancerous cysts that are likely endometriomas. Because I'm a poor surgical candidate, they want to try more conservative treatment, starting with birth control.

And that brings me to today, after a night of excruciating ovarian pain, nausea, a precarious mood state, and just generally feeling like crap.

Having endometriosis with CFS really complicates things, but I can't help but wonder if mine are intertwined somehow. If I'm able to get some cyst tissue or fluid, I fully plan on sending to Dr. Chia for staining, and possibly also culturing.

I forgot to mention that during my periods, I get very sick. Fever of 102, malaise, headache, cough, stuffy nose. It feels like a bad cold. When I mentioned to gynecologist, he said it was just inflammation. Which I understand--- but the stuffy nose and cough? I'm just really skeptical that's only inflammation. I've had endometriosis inflammation before without the stuffy nose and cough. It is different.

Anyway, there is my cathartic and hormonal ramble If you have endometriosis too, feel free to chime in.

 

[halcyon]

That sounds absolutely horrible and I'm really sorry to hear you're having all of that on top of ME/CFS. I would definitely try to get some samples to Dr. Chia, I think that's a great idea. You probably saw this from earlier this year:

"In a second study, Chia obtained pathology specimens from 27 women with CFS/ME who had undergone total hysterectomy or salpingo-oophorectomy for chronic pelvic pain. 24 of the 27 specimens stained positive for EV, whereas none of 15 healthy control specimens were positive. Three SCID mice were injected with lysate from EV-positive specimens and the mice were sacrificed at either 2 or 5 weeks afterward. Spleens and fallopian tubes stained positive for EV at both 2 and 5 weeks, although spleen stain was less obvious at 5 weeks. Western blot studies of all mouse fallopian tubes demonstrated enteroviral proteins."

 

[PDXhausted]

I did indeed, thank you for bringing it up here. I thought it was the greatest thing to come out of the March conference, yet hardly anyone talked about it.

I am leaning towards that as the most likely theory for my case so far. My husband is a pathologist and has spoken to Dr. Chia a couple times. Unfortunately I'm just too sick to get cut open right now, but I'm going along with Dr. Chia's treatments anyway. Tried titrating inosine this week and was going well so far but need to let my body adjust to hormones for now.

The unfortunate thing is, I don't think Dr. Chia had seen patients grow cysts while on equilibrant, so that could just be an endometriosis thing, rather than an enteroviral thing.

There is alot of connection between women who have endometriosis and autoimmune disease, so likely a link there. Though, I'm one of those people who never had it until my early 20s. Which also coincides with exactly when I became sexually active with husband... Who has Crohn's disease, which has also been linked to enterovirus. That is really awkward to talk about online, but I think it needs to at least be considered as a theory.

 

[PDXhausted]

Actually a counterpoint to the theory... If my endometriosis is autoimmune and equilibrant tends to exacerbate autoimmunity, then perhaps that is why these cysts are growing. (In addition to the two large ones, I also have smaller ones covering my ovaries).

Its hard to say though. Obviously my ovaries are screwed up regardless of equilibrant. I think likely what is happening is that my endogenous hormones are tipped just slightly out of balance, causing the ruptures. And the slight estrogenic/anti-progestogenic effects of the herbs were just enough to tip them towards functional growth.

Its hard to quit though, when its helping my ME/CFS symptoms so much!

 

[JAM]

I'm not dealing with it currently, but had a hysterectomy at 23 because of the severe pain caused by endometriosis.

 

[PDXhausted]

Wow @JAM , hysterectomy at 23. Endometriosis is so horrible! Did you keep your ovaries? If not, did you go on HRT?

When did your CFS/ME develop? And do you notice a connection between your hormones and symptoms?

 

[halcyon]

Actually a counterpoint to the theory... If my endometriosis is autoimmune and equilibrant tends to exacerbate autoimmunity, then perhaps that is why these cysts are growing. (In addition to the two large ones, I also have smaller ones covering my ovaries).

Its hard to say though. Obviously my ovaries are screwed up regardless of equilibrant. I think likely what is happening is that my endogenous hormones are tipped just slightly out of balance, causing the ruptures. And the slight estrogenic/anti-progestogenic effects of the herbs were just enough to tip them towards functional growth.

Its hard to quit though, when its helping my ME/CFS symptoms so much!

That is a tough call, especially not knowing if it would have happened anyways without Equilibrant. From a little reading it sounds like endometriomas definitely attract the attention of the immune system and indeed this paper says:

"Endometriosis patients generally accumulate peritoneal fluids rich in macrophages in the pelvic cavity (Chacho et al., 1986; Harada et al., 1997). Our fluorescence-activated cell sorting (FACS) analysis using FITC-labelled anti-human- CD14 antibody confirmed that the majority of cells in the peritoneal fluid of endometriosis patients were macrophages."

The astragalus in Equilibrant definitely stimulates macrophage activity, so perhaps the Equilibrant is increasing your immune reaction to the endometriomas and exacerbating the inflammatory symptoms. Just a wild guess of course, there's no way to know for sure that is what's going on.

 

[ahimsa]

@PDXhausted, I really feel for you! Just the pain alone from endometriosis can be excruciating. And you have so many additional horrible symptoms on top of that.

I can sympathize due to past my experience, and I wish I could give you some more useful info, but I'm not having any current problems with endometriosis. I had laporoscopic surgery in 2000 to remove the endometrial lesions -- no hysterectomy, just excision of abnormal tissue, most of which was on my right ovary and fallopian tube. I have heard that when lesions are more diffuse it is harder to have successful surgery. So I guess I was lucky that the disease was mostly concentrated in one location.

At any rate, the surgery managed to get rid of the endometriosis pain for me. I was hoping it would also help reduce symptoms from my ME/CFS and Orthostatic Intolerance (NMH) but no luck on that front.

It does seem that endometriosis and ME/CFS are somehow linked together. For example, there is at least one study showing that a patient with endometriosis is more likely to also have ME/CFS (or was it the other way around?). But other than some very vague guesses about autoimmune issues or inflammation it is beyond me how they might be linked.

Anyway, I'm sending you some HUGS and hoping you find some answers!

 

[PDXhausted]

@ahimsa thank you for the kind words I'm so glad you were able to get relief from surgery, and keep all your "parts"! Thats nice to know that they were able to excise the tissue off your ovary. I suspect I have alot of scarring on my ovaries, which might be what is causing the cysts in the first place.

At least previously, birth control worked to decidualize my endo before, so here is hoping it will do it again without making my ME/CFS too much worse. I probably will eventually need to surgically address the ovaries or be on birth control for the long haul. But if the ovaries are beyond saving, then after removal I'd probably need to be on HRT anyway. Sigh!

 

[JAM]

Wow @JAM , hysterectomy at 23. Endometriosis is so horrible! Did you keep your ovaries? If not, did you go on HRT?

When did your CFS/ME develop? And do you notice a connection between your hormones and symptoms?

Yes, I kept my ovaries. My symptoms developed before I was born. Yes, there have been periods where my symptoms did seem to follow a cycle, but only in severity, not in frequency or duration.