It’s moments like these that keep me going

I have very bad hormonal problems and I have endometriosis too. This post explains what endometriosis is if you don’t know. In any case it’s can be excruciatingly painful.

I did have the pain completely under control with the help of a acupuncturist. I was pain free for about 5 months as she treated me. Unfortunately as I became more and more housebound I stopped being able to visit her and the pain has returned. BIG TIME.

So the other day I was in a lot of pain again. The most in a long time. Acute pain is a strange thing and unless one has experienced it I don’t think it can be understood. I’ve been told that endometriosis pain is like being in labor. I don’t know if this is actually true because I’ve not given birth, but my gynecologist once told me that so it’s somewhat credible.

The worst times are when I have no warning. The pain just crashes in on me without any buildup. If I have enough warning time I can usually control it to a tolerable level with Ibuprofen, so not every month is equally hellish. Also I count myself very lucky in that I only have acute pain at the very most for 48 hours and generally I can get it to a tolerable level. Some women with endo have pain every day of the month and have no control of it at all. It can completely destroy some people’s lives. I have it easy.

Anyway, twice now I’ve had strange transcendent experience associated with the pain. The first time I tell a story of my pain leading to a spiritual experience is here—my brother had just died a matter of days earlier:

Tuesday night I was subjected to the worst physical pain I’ve experienced in my life. The endometriosis pain went through the roof. It seems it must have been associated with my grief. I don’t know how else to explain it. But the usual pain reliever I use which minimizes the pain to some extent failed to work. I was in excruciating, unremitting pain for three hours. I struggled and cried and moaned and squirmed. I became exhausted. When I finally became exhausted I lay there and thought of my brother. I thought of how the priest had said that my brothers suffering may have eliminated his need to visit “purgatory,” a concept in Catholicism. A place people go to become purified before going to heaven. (No, our family is no longer Catholic and it’s a long story as to why we had a priest doing our service, but he was an exceedingly nice guy.)

In my pained delirium, both emotional at the loss of my brother and physical as I suffered my endometriosis this idea of purgatory washed over me. I thought, “God is washing me of my sins.” I felt a surge of love and then relief washed over me and while the pain still burned in my gut I was finally free of my suffering. My intellect rebelled–WTF? This is nuts. I don’t believe this crap I thought–but I remained in peace the pain massaging my soul.

Some of you might find this line of thinking masochistic, but when I told a friend the next day of my experience she told me it was not delirium it was spiritual emergence. She sent me a link to a very helpful Buddhist piece of writing by Shinzen Young. This piece by Shinzen Young is worth reading for anyone dealing with any kind of pain.

In any case, my pain this time was not as severe as it was in the above account but it was still bad. It took about an hour and a half for the really acute part of it to pass. This time the transcendence happened upon the pain remitting. I was meditating throughout the painful experience, trying to ease into it and accept it. Anyway, I wasn’t particularly successful, but when it did finally pass I was awash with JOY. Honestly, I don’t believe I’ve ever felt such joy. It was not just a response of relief. Believe me my pain remits at some point every month and I’m usually too exhausted to feel anything but vague deliverance. This was different. It was grace visiting me. And I lay in bed with a huge smile on my face glowing with JOY. And I use joy instead of happiness because this was a feeling I’ve not experienced before. Following the joy I was then flooded with LOVE. A overcoming feeling of love that heals all. I lay with that a while and then I fell asleep. The pain had woken me after only 4 hours of sleep so I was exhausted.

I woke up and the whole experience was only a memory—I in fact had a very bad day—painfully ill, but worse than usual, because for some reason I am always sickest in general on the first three days of my period—that’s the messed up hormones in general. Part of it, too, I believe is a reaction to the Ibuprofen I take to help minimize the pain.

BUT, it is these PEAK moments in my life that whispers to me there is more. That I live for a reason. And that our human spirits are conduits for healing and transformation.

Peace to you all.

Post note—info on how I am treating my endo:

Ibuprofen actually has a really nasty side-effect profile a lot of which I experience. The most common side effects from ibuprofen are rash, ringing in the ears, headaches, dizziness, drowsiness, abdominal pain, nausea, diarrhea,  constipation and heartburn. I experience the highlighted symptoms every time I take it. I get so dizzy and drowsy I can hardly function. I hate taking it because it has potentially dangerous adverse effects too, like bleeding ulcers.

I need to get my acupuncturist back in my life. I’d rather have no pain than these spiritual experiences that seem to be associated with the pain!! I have spiritual experiences in any case. Don’t need these!! Though I’m still grateful for them.

I’m trying a new supplement for which there is actually a lot of scientific studies on effectiveness for endometriosis. Much more than for most supplements.

From Medscape:
Pine Bark Extract Reduces Symptoms of Endometriosis

Long-term treatment with French maritime pine bark extract (Pycnogenol) was effective in reducing symptoms of endometriosis, such as pelvic pain and dysmenorrhea, according to the results of a study reported in the March issue of the Journal of Reproductive Medicine.

“The cause of endometriosis is unknown and treatment to fully cure endometriosis has yet to be developed,” lead author Takafumi Kohama, MD, from Keiju Medical Center in Nanao City and Kanazawa University School of Medicine in Ishokawa, Japan, said in a news release. “Common hormone treatments such as gonadotropin-releasing hormone agents (Gn-RHa) may likely restrict women from becoming pregnant during treatment. Danazol, another hormone treatment, produces side effects such as ovarian deficiency, osteoporosis and obesity.”

From 1999 to 2004, 58 women who had persistent symptoms after endometriosis surgery performed within 6 months before study enrollment were randomized to receive the antioxidant pine bark extract or Gn-RHa. Mean age was 33.2 ± 4.0 years (range, 21 – 38 years). Women in the pine bark extract group received 30 mg capsules by mouth twice daily, immediately after morning and evening meals, for 48 weeks. Women in the Gn-RHa group received injected leuprorelin acetate depot, 3.75 mg intracutaneously, 6 times every 4 weeks.

Regular menstruation and ovulation were confirmed for 3 months before treatment, and women were examined before and at 4, 12, 24, and 48 weeks after treatment to evaluate control of symptoms, including pain, urinary and bowel symptoms, and breakthrough bleeding. An investigator performed an interview and gynecologic examination, and pain was evaluated by patients’ self-assessment.

“As expected, Gn-RHa suppressed menstruation during treatment, whereas no influence on menstrual cycles was observed in the Pycnogenol group,” Dr. Kohama says. “Gn-RHa lowered estrogen levels drastically and in contrast, the estrogen levels of the Pycnogenol group showed no systematic changes over the observation period. In addition, five women in the trial taking Pycnogenol actually got pregnant.”

At the start of treatment, both groups were similar in the proportion with severe pain, pelvic tenderness, and pelvic indurations. After 4 weeks, symptom scores in the Pycnogenol group were slowly but steadily reduced from severe to moderate. Overall, this group experienced a significant reduction in symptoms of endometriosis by 33%. Although the Gn-RHa had a more efficient reduction in symptom scores, relapse of symptoms occurred after 24 weeks post treatment.

I’m going to give this supplement a couple of months and if it doesn’t help then I’ll get my acupuncturist to make home visits which she does make, but they cost more and affording all this stuff gets to be a bit much.

6 thoughts on “It’s moments like these that keep me going

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  1. you’re not being sappy at all Sally…
    since you’ve resonated deeply with buddhism in the past do check out Shinzen Young’s work…he teaches meditation specifically to those who deal with physical pain…

    love to you.

  2. It has only been in the last few years that I have experienced excruciating pain, mainly back pain along with osteoarthritis. Before that I had no idea how many other people go through such experiences. I am living in an assisted living facility where almost everyboy else, including the workers, are familiar with personal physical pain. It has transformed my entire view of life to realize how any others are going through such pain. All of my faith and beliefs have been changed to the extent that my previous naive belief and experience of general comfort and health have been virtually wiped away. It fascinates me to read how Gianna and others deal with extreme pain, and my admiration grows for all the other people who deal with it and either learn from accepting the pain or devise strategies to get rid of it. There is much to learn, and so far I do not see that there is any good answer to why we have to endure extreme pain, or what to do about it. Everyone seems to have a different solution. (Sorry for this sappy post. I’m still dealing with the shock of discovering my own pain.)

  3. I never had endo but suffered with extreme back pain for years until my surgery in Jan. 08. I lived on 12 ibuprofen a day for years practically. The back pain is how I learned about Shinzen Young. Stephen Levine also has amazing meditations on pain. The pain is actually what brought me to meditation and acupuncture. I saw some Newsweek about alternative treatments for pain and it piqued my interest. Grateful for the gifts it held for me. Glad I don’t have to cope with it anymore. (Not recommending surgery – for me it was really the only option at that point, having exhausted all others.)

    I hope it is possible to relieve yourself of the pain however you can – you are a spiritual being and you’ll have transcendent experiences no matter what, as you pointed out.

    Sending healing thoughts your way, honey.

  4. “BUT, it is these PEAK moments in my life that whispers to me there is more. That I live for a reason. And that our human spirits are conduits for healing and transformation.”

    Wow, I’m sorry to hear about that one too!

    I think your comment above is quite telling. The fact that you can take away so much, and that you find more from life because of these moments, is very inspiring.. I have so much to learn from you, that is for sure.

  5. Hi Gianna.

    I too have endo.

    I really like your blog post. I TOTALLY know what you’re talking about. Often, the only lens that makes any sense to understand this kind of pain through – without going completely insane – is a spiritual lens. I am not actually religious (was raised quite Catholic), but I pray my little butt off when I’m in pain, and it is extremely sincere and does ease my suffering and bring me to spiritual places I never thought I would go to. Places that, actually, I am unable to go to when not in an other-worldly amount of pain.

    Like you said, I would give up these spiritual moments in exchange for pain relief.

    In Lakota American Indian tradition, women “on their moon” go stay in a separate “moon tent” teepee. That is not because they are unclean or anything like that, but because they are viewed to be so energetically powerful when menstruating that the pull of that energy can influence whatever other ceremonies or tribal activities going on at the time (that’s how a tribal member explained it to me). I saw a beautifully-painted moon tent when at a Lakota Sundance ceremony. I envied the women I saw there, resting in the moon tent. I often wish for my own moon tent, possibly with another understanding woman there to care for me during that painful time. In wishing for a moon tent, I am asking, “What if the world were arranged so that I could care for my physical and spiritual self in the way my body desperately needs?” Instead, I find myself drunk on pain pills in a conference room at work, trying to keep it together, or trying to walk correctly with coworkers on stairs when in so much leg pain I feel like crumbling and crying. Is this endurance bravery, or just ridiculous? Or is our culture screwed up in that it doesn’t make space for those who are in chronic pain to care for themselves?

    An awesome, poetic book I’ve recommended before has a lot of writing similar to your post, by a woman with CFIDS, called The Alchemy of Illness by Kat Duff.

    I hope you will keep us updated on how trying your new supplement goes. Thanks for your writing!

  6. Thanks for your interesting posts. Your endometriosis sounds like an intensely unpleasant thing to have to cope with. I’ve been considering trying acupuncture for some time, for physical and mental issues, but I think the fear of the unknown and doubt over whether I trust a stranger to put needles in me has held me back.

    I hope this new supplement has good results for you 🙂

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