Endometriosis

Update 2013. The below post is from 2007. I’ve since healed (functionally cured) my endometriosis: Endometriosis? Mine responded to natural care. Here I email the MD who mocked me when I refused her “care”

In the process of discovering how contrary to well-being psychiatry is, I’ve uncovered massive amounts of dirt on all western medicine.

I now don’t want to take any drugs ever.

I’ve been prescribed numerous pain relievers in the past 6 months as my endometriosis has returned with a vengeance.

Endometriosis is the phenomena of endometrium (the lining of the uterus) growing outside of the uterus all around the abdominal cavity. Like the uterine lining, this tissue builds up and sheds in response to monthly hormonal cycles. However, there is no natural outlet for the blood discarded from these implants. Instead, it falls onto surrounding organs, causing swelling and inflammation. This repeated irritation leads to the development of scar tissue and adhesions in the area of the endometrial implants. It is treated in various ways, most often through the use of various god-awful hormones which leave one with hairy, acne covered bodies and a deepening of the voice and other lovely male like qualities.

I was first treated for it when I was 16 with the good old birth control pill. (I took it all month long and therefore did not have periods) It made me go bonkers. I stopped going bonkers when I stopped taking the pill.

The endometriosis came back so I had laser surgery. All the little lesions were burnt off. Well, that was the idea, but my gyno told me that the endometriosis looked like someone had taken a brush with paint and splattered my insides. So he couldn’t actually get all of it. I had splatters all over my intestines for example, so those couldn’t be touched because of the risk of rupturing the wall of the intestine. He predicted I would have no relief.

I did have relief for a few years after the surgery, however.

Then I started taking Risperal. Risperdal raises prolactin levels. High levels of prolactin make your periods stop. So for many years the Risperdal “treated” my endometriosis.

Two years ago I got down to 4 mg of Risperdal and my period came back. Within a year and a half my endometriosis was raging again. Now every month I’m faced with having to take a pain reliever for 3 or 4 days every 6 hours.

I’ve learned that all the pain-relievers I’ve tried have nasty-ass, dangerous side-effects. Most of them don’t work. I’ve taken many now and settled on Ibuprofen. People don’t realize how dangerous Ibuprofen is. It can cause heart attack and stroke and kidney disease, but much more commonly it causes serious stomach problems, often without being aware of them. It is not particularly dose related and can occur after as little as one dosing. Taking food with it does not diminish risk. A list of side effects:

Constipation; diarrhea; dizziness; gas; headache; heartburn; nausea; stomach pain or upset.Seek medical attention right away if any of these SEVERE side effects occur:

Severe allergic reactions (rash; hives; itching; trouble breathing; tightness in the chest; swelling of the mouth, face, lips, or tongue); bloody or black, tarry stools; change in the amount of urine produced; chest pain; confusion; dark urine; depression; fainting; fast or irregular heartbeat; fever, chills, or persistent sore throat; mental or mood changes; numbness of an arm or leg; one-sided weakness; red, swollen, blistered, or peeling skin; ringing in the ears; seizures; severe headache or dizziness; severe or persistent stomach pain or nausea; severe vomiting; shortness of breath; stiff neck; sudden or unexplained weight gain; swelling of hands, legs, or feet; unusual bruising or bleeding; unusual joint or muscle pain; unusual tiredness or weakness; vision or speech changes; vomit that looks like coffee grounds; yellowing of the skin or eyes.

I hate taking Ibuprofen. I also hate pain. I do suffer from dizziness, light-headedness and diarrhea the entire time I’m taking Ibuprofen. I just cross my fingers with the rest of it.

I may have the surgery again, but I don’t want to do the anesthesia as it makes withdrawals worse. I hope to be able to stick out the pain until I get past the withdrawals and then I will have the surgery. Surgery is not a permanent solution, so I hope that I’ll reach menopause before it returns. Blah!

So the lovely state of affairs for me is that I have severe PMS for two weeks then I have severe pain for 4 days. Then I have about 10 “normal” days.

If all goes well with my latest additions of supplementation, I will no longer have PMS. The doctor was oh so confident. I just have to wait and see. I don’t care if she is a holistic doctor–they all want to believe they can cure you, regardless of their philosophy. They like to promise you’ll be all better.

Okay–enough bitching.

I’m just being lovely today, aren’t I?

About Monica Cassani

Author/Editor Beyond Meds: Everything Matters

13 Responses

  1. Mark

    I don’t understand the morality mindset (most)doctors use on anti-pain medicine. Who started it and why is it flourishing.
    T.P.T.B. use morality to justify the prohibition of narcotic pain medications like Dilaudid. Thinking People should live in pain, because one day when they have that big accident/medical problem they are going to need that medicine then, and it won’t work.

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  2. Stephany

    Gianna, Ibuprofen causes menstrual bleeding to become worse. Each time I was pregnant the doc always reminded me not to take it at all during pregnancy or after having a baby.
    Also, you are right on target w the hospital/hormone issue. Hormones and all of this is so complex and holds the answer to many women’s “psych” issues, that are in fact hormonal issues.

    Problem with pscyhiatry is that it is a field of ‘medicine’ that does not consider the entire body. [for instance in locked down psych wards where all they do in psych meds, unless a person broadens there realm of thinking].

    Good luck, and feel better. Your quest to feel well, one day will most likely help other women. Also, Lamictal works for evening PMS moods if a psych med is deemed needed or wanted to be used.

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  3. Gianna

    Oh…I’m on Lamictal, currently tapering off. It certainly didn’t help the PMS and it made my sedation worse. My doctor had me on twice the recommended therapeutic dose (400 mg). Moods are no worse at the current 225 mg.

    I don’t bleed so badly during menstruation, but it makes me wonder if it makes the internal endometrium bleed worse and thus make the problem worse. That would make sense in my experience of drugs–but now I’m being paranoid.

    Anyway, really, it’s the only thing that controls the pain at all and I’ve tried every NSAID as well as narcotics.

    It’s my chosen poison for now.

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  4. Liz

    Another problem with endo is that the implants start out as ‘clear cell’ implants. So when one has the lazer surgery as you did, they can only hit the spots that are visible and hopefully remove any adhesions that have developed. The minute you cycle again, the endo is back enough to see.

    By the time I was 30, I had already had two lazer surgeres for this, and by the time I was 35, I had two more and then finally had a complete abdominal hysterectomy because I couldn’t stop the pain of the hemmoraging. I feel for you, Gianna. This stuff is absolutely horrid and painful as hell. I’m relieved to hear that you are not relying on opioids for this though. If you are planning to endure this until you see the horizon of m-pause, opiates could turn into a dangerous solution. To my knowledge, Ibuprofen is not addictive, so at least it has this going for it, as well, that it seems to work to some extent for your pain. So, this is all good, right? It sort of sounded like you were beating yourself up for taking this. I completely understand that you don’t ever want to take another drug. I am the same way after c/turkeying off all of mine. Isn’t that odd how this happens? Sort of like an epiphany, of bigger sorts! Do you think our sudden disappoval of drugs is all part and parcel to withdrawing from them? It seems that so many come to this same conclusion after leaving them behind. That is, most seem to say, ‘I never want to touch another one as long as I live’, and to my knowledge, no one has taught this one in particular to any of us! Sorry to get off topic here…!

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  5. Gianna

    Doesn’t seem off topic to me–I started the post by saying “I don’t ever want to take another drug ever.”

    As I’ve come off psych meds I’ve started paying attention to pharma and all the shit that they do for profit. It seems most drugs have serious complications. Even the so-called life-saving ones.

    Statins for example are ugly ugly drugs and from what I’ve been learning cholesterol is not nearly as evil as western med (or big pharma) would have you believe. I’ve read stuff about higher cholesterol levels being protective as women age, for example. There is a ton of stuff on the “myth of cholesterol” out there if you look it up. I wouldn’t take a statin ever.

    As far as opioids, no I would never consider taking them regularly. I’ve taken them a few times but they failed miserably in terms of being effective. I guess that’s good. I suppose I would be confronted with a dilemma if they worked really well.

    Then there are antibiotics– the biggest life-savers out there and I suppose sometimes they are, but they are majorly over-prescribed and they wreak havoc on your gastro-intestinal health, which can in turn wreak havoc on the rest of your body.

    I got my gut back in working order after 20 years of IBS with the simple use of good probiotics. 20 years of severe IBS treated by dozens of gastroenterologists with multiple meds leading to no healing whatsoever. Six months of probiotics and I have a normal gut and no more IBS. That is a stunning indictment against western medicine in my opinion.

    People just don’t know and I often think they don’t want to, but I don’t get why. I resisted for many years as well. Now I go for natural treatments first whenever I need a solution. Unfortunately I haven’t found a natural treatment that works for endo. The diet recommended for endo is contrary to that recommended for good mental health. Animal protein is important for mental health and endo recommends vegetarian. I choose mental health over a physical pain free life, myself.

    But I do know that people have healed themselves from endo by means I’m not willing to go–meat free that is.

    Anyway..I’m kind of running off at the mouth here. thanks for your comment.

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  6. M

    You’re right about Ibuprofen and Statins, however, a silver lining for NSAIDs and Statins is that the are associated with a strong risk reduction for many types of cancers because of COX-2 enzyme inhibition. Watch out for GI bleeding that may be indicated by black stools with Ibuprofen. It might be tough to tell the difference between GI bleeding and endo bleeding.

    You’re also right about cholesterol. Studies that plotted mean mortality rates by total cholesterol found a curvilinear relationship, with high mortality at the high end, a dip in mortality, and then another increase in mortality at the low end of total cholesterol levels (<140). Low LDL is associated with increased psychiatric problems.

    My theory on the matter is that when we have a mood disorder metabolism is altered in someway that “burns up” fat more quickly than normally. That may in someway contribute to fatty acid supplementation protective effects for mood disorders.

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  7. zusee

    I was diagnosed bipolar and suffered for years on cocktails of medications. Finally got tired of that and was just using klonopin for anxiety and ambien to sleep at night. Bad bad decision. I started hoarding the klonopin to deaden myself when I was in a severe depression, and became dependent upon it, and went downhill and finally ended up hospitalized after taking full bottles of both in 2003.

    They put me on seroquel, zoloft, paxil, wellbutrin, and many more. Nothing worked for the obsessiveness and the depression. I finally tried some supplements called EMPower and they worked – you can find the company online, it’s called TrueHope. Since that time, in 2004, I have been completely well. Yes, completely well. I’m religious about taking the supplements, eating well, tracking my symptoms and sleeping regularly.

    I also have endometriosis. It’s really bad this year. I am finding that a lot of women with endometriosis are also bipolar or have depression or other central nervous system disorders.

    Interestingly, endometriosis is now being looked at as an autoimmune disorder and although I’m scheduled for a total hysterectomy in January (also removing both ovaries), I have found a treatment that may work. It’s called Low Dose Naltrexone, and it boosts immune function. It was originally used for drug addicts when they discovered it boosts immune function. They are now using for AIDS and MS, very successfully, to mention just two of the illnesses it works well for.

    Having had such good results with the supplements replacing my years of torture with horrible pharmaceuticals, I am hoping once again to find a way to bypass the damn pharmaceutical companies with my endometriosis. Also to save my ovaries!! A new study published at http://www.neurology.org/cgi/content/short/01.wnl.0000276984.19542.e6v1 directly links pre-menopausal ovary removal to DEMENTIA and reduced cognitive function.

    I feel like the doctors and the pharmaceutical companies just plain fuck with us too much. Hormones, mind drugs, surgeries… sometimes I wonder if it’s all just a big test and we’re the lab rats.

    Anyway, I wanted to share my experiences and hope that you have some luck with your illnesses soon.

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  8. Duane Sherry

    Zusse,

    With the ovaries, and hormone-related, you may want to check out this site – http://www.blockcenter.com

    Ask if they know a good doctor in your area (for referral).

    Wonderful to hear about the EmpowerPlus – I’m not surprised.

    Sounds like you’ve learned a lot about yourself – what works, and what doesn’t – gotta agree with you on the docs and pharm companies – they’re no good – better to listen to your own body – sort through things – find out what works.

    Good luck,
    Duane

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  9. JUNEMATTESON2

    I have been on lamitacla for a year at 150 mg
    i forgot to take the med for 4 days . well forgot is wrong i have no health insurance so i couldnt’ afford it
    i finally got it and I am on days 3 with it. during missed periods of it i was vomiting badly and then when i got my med shad horrible diarehia all day yesterday. i also take plenty of pain meds . i was in a horrific car accident. i have a tramactic brain injury plus my spine is totally fucked had a parial hip replacement and i have fibro as well. i am bi poar, depression,ptsd. so basically i take 9 meds i have alwyas had vomiting issues dry heaves or just plain old vomiting every morning. so i am wondering if anyone else has stomach issues. thanks for listening.
    June

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  10. Karen

    You need to get on a probiotic that is guaranteed to survive the stomach acids. You might be able to avoid surgery.

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