Why I’m Not Celebrating Being PMDD-Free

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Editor’s Note: See the bottom of this article for an update by the author on September 5, 2023.

On December 24, 2014, I had a hysterectomy and bilateral oophorectomy that cured the PMDD I had been fighting for almost a decade. PMDD stands for premenstrual dysphoric disorder, which is a hormone-based mental illness with extreme manifestations and consequences. PMDD is a beast that can transform the most healthy and loving minds into wicked and self-loathing shells of consciousness. And it works that evil like clockwork, each and every month.

So why aren’t I celebrating my freedom from PMDD? My peace and equanimity have been restored. I no longer take any psych drugs. My only prescription is estradiol as a hormone replacement. I love my husband again. The crying fits are over. My motivation is restored. Suicidal thoughts are nothing more than a dark memory that lives in an ever more distant past.

I’m not celebrating because so many of my sisters are still stricken by this disease. They are pleading with general practitioners, OBGYNs, and psychiatrists for access to effective treatments. Yet they remain unheard. My sisters are remanded to the care of mental health professionals who ply them with therapy and scripts for SSRIs, SNRIs, and benzodiazepines, none of which offer long term relief from the horrors of PMDD.

Why are we still suffering when there is a cure? A hysterectomy and bilateral oophorectomy, a relatively inexpensive surgery that rarely has major complications, can permanently end our monthly misery.

I think there are many answers to the question above. First, many practitioners of medicine do not take the complaints of women seriously. Studies show that women’s reports of pain are commonly dismissed by physicians and women’s reports of disease processes are written off as psychosomatic.

This happens in the face of other studies that demonstrate that women, especially those of childbearing age, are affected by hard-to-diagnose autoimmune diseases at a much greater rate than men. Medicine has a very long history of ignoring the legitimate complaints of women. We are frequently handed psychiatric diagnoses before we are offered lab tests or diagnostic imaging.

Many ailments that were once thought to be psychogenic are now known to have a physical genesis. It wasn’t until the 1980s that h. pylori was demonstrated to be the mechanism behind peptic ulcer disease, which was previously blamed on stress. The 1980s also unveiled the etiology of Lyme disease. In the more remote past, epilepsy and Crohn’s disease were also once thought to be psychogenic.

The etiology of PMDD is not yet known. I suspect it is autoimmune in nature and is somewhat akin to an allergy to progesterone. But that is simply anecdote at this point. Another anecdotal observation I have made is that PMDD, dysmenorrhea, and other symptoms of hormonal disruption or intolerance are very common among women on the autism spectrum.

In medical terms, PMDD seems to be commonly co-morbid with autism. But we autistic women are still fighting for recognition because there is an ongoing misperception that autism is a condition that almost exclusively affects males. Autistic women, particularly those of us born before the 1990s, are commonly misdiagnosed with bipolar disorder or borderline personality disorder before reaching a point of accurate diagnosis. Obtaining effective health care as autistic women is an uphill battle that is especially steep and discouraging.

If research into PMDD continues to be set aside because it remains classified as a psychiatric disorder, most theories of PMDD causation will remain anecdotal. And in the meantime, more women will lose their quality of life or in some cases their actual lives.

Women affected by PMDD are discouraged and sometimes outright barred from access to the surgery that can cure us. Many physicians’ perspectives are still so paternalistic that they do not believe we should be granted the freedom to part with our reproductive organs, even if those organs are destroying us.

We’re up against a lot in the effort to bring attention and research to PMDD. We’re up against a culture whose instinctual reaction to perceived ‘new’ diagnoses is gaslighting, which is the systematic repudiation of the report of the afflicted person, no matter how legitimate that report may be. Couple this propensity to gaslight people with ‘new’ disorders with a low regard for the credibility of women’s reports to their health care providers, and it starts to look like we have a very long and difficult road ahead of us in terms of awareness and research.

We also face proponents of toxic femininity, who tell us that PMDD is a cultural myth so that they can promote a fantastical feminine ideal where female hormones play no role in disease processes. I’m sure that all of the women with polycystic ovarian syndrome and endometriosis, syndromes that are also frequently co-morbid with PMDD, would love for that fantasy to be true, but unfortunately, it remains a fantasy.

So I’m not celebrating my 2-year anniversary of freedom from PMDD. I can’t celebrate while my sisters suffer. I will continue to use my online platform to advocate for recognition of and research into this disorder, because our complaints are valid, and we cannot remain unheard.

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Author’s update (September 5, 2023): There was so much I didn’t know when I wrote this piece. Now, in 2023, I’ve altered my perspective based on knowledge gained since my surgery almost a decade ago.

Hormones are key to the harmonious functioning of every tissue, organ, and system in the body, including the brain. When one shuts down hormonal function through the use of GnRH agonists like Lupron, or through surgery like oophorectomy, the short- and long-term results can be devastating. While my PMDD was cured, first by Lupron, and finally, conclusively, by oophorectomy and hysterectomy, the downstream adverse effects of throwing my body into complete hormonal starvation at the age of 38 still affect me today.

It’s true, I’m no longer suicidal every month, or at all for that matter. But other struggles have replaced the cruel dysphoria. Struggles that are in their own way as debilitating as the PMDD was. If I could go back to 2014 with the knowledge I have now, I’d have first tried dietary and nutritional adjustments to treat the PMDD. I would have experimented with ketosis, intermittent and prolonged fasting, and consumption of foods that feed the estrobolome. The estro-what?  Another word I’d never heard nine years ago. Estrobolome is a word that describes the communications circuits between the gut microbiome and estrogen level and behavior in the body. All of these strategies are incredibly effective in altering hormonal and cognitive function, without the negative and irreversible effects of pharmaceuticals or surgery.

With so many more options to address PMDD available, I felt it was my responsibility to write this addendum. All organs are present within our perfectly designed bodily systems for very good reasons, and malfunctions within our bodies can usually be corrected by non-pharmaceutical and non-surgical means. My current position is that GnRH agonists and surgery should be avoided for the resolution of PMDD.

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Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.

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35 COMMENTS

  1. Keep at it. There are doubtlessly a variety of physical conditions easily misdiagnosed as psychiatric. Psychiatrists will be ignorant of them and in danger of damaging their referrals with inappropriate stock treatments that are naturally ineffective.

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  2. I’m quite sure my doctor, a woman, believed I was neurotic when I asked her to look at a hard, attached mass I knew was cancer. Nope, not to her it wasn’t. I asked her how she knew it wasn’t cancer. “Because it isn’t” was her reply. Itch cream was prescribed. I went back a month later, with what was now a large-ish hard, attached mass. An ointment edged out the itch cream–more staying power. I finally went to a specialist (also a woman), who hadn’t even started the specialized part of the exam when she began saying words like “radiation” and “chemotherapy.” A CT-scan found that it had spread to my liver, and also spawned a secondary tumor, which proved to be highly inconvenient in the long run, because chemo didn’t finish it off and radiation seemed to feed it. One life-changing massive surgery later…(two, if you count the unnecessary one)…

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  3. Great article Twilah! Keep up the good work.

    My only criticism is your wording. What you have described sounds like a hormonal problem related to the reproductive system. That would make it a real, physical condition and not a “mental illness” at all. Most of us here don’t believe in mental illnesses as you probably know.

    It’s ironic that you were denied a hysterectomy on the grounds of your psychiatric label. In the old days they sterilized us without our consent. As long as they are the ones who remain in control!

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  4. FeelinDiscourged I agree with your point on wording. I chose the words I did because they are references that are easily understood. I am absolutely skeptical of the concept of mental illness, but I didn’t choose to address that here as it was too far outside the scope of the piece.

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    • PMDD was recognized as an official mental health illness in 2014 I believe. Prior to that, mental health officials were skeptical of its nature and whether it should be treated as such. I have been diagnosed with PMDD since 2005 and have tried everything from SSRIs to now counseling. It led to extreme postpartum after both of my children, which was a smack in the face because while I was pregnant I had no symptoms at all for obvious reasons, which was amazing! At this point in my life I do not wish for a hysterectomy as I would like more children. I do wish there was better research being done as there is no long term research for SSRIs or any other drug. I applaud you for being so open about it and I am so happy that you were able to receive the help that you needed in order to overcome this terrible disease. I only hope that care is taken to help the other women out there who are suffering each month.

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  5. I’m so glad you were able to get help.

    Anecdotally, in horses, some mares become evil due to hormonal problems. It’s called being “mareish.” Some of them attack their humans or become impossible to work with. There are various equine specific treatments available, and many of them do help. Spaying a horse is a major, risky surgery. It’s interesting that in equines the cause of this type of erratic behavior is generally seen as physical instead of psychological and we immediately go to medical treatments.

    Perhaps it’s because an 1100lb animal trying to kill you is very scary.

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  6. I’m appalled at the suggestion that hysterectomy be considered the ideal treatment of menstrual difficulties. When we start treating male hormonal issues with castration, I’ll reconsider. Part of healthcare equity is making sure that women aren’t led down the road of easy answers. This piece uses emotional arguments of women not having their medical needs met in order to support that hysterectomy is a good solution to this issue. That’s simply not good logic.

    After my hysterectomy – and the resulting four revision surgeries in five years to repair my permanently damaged vaginal cuff, I warn women against this surgery. There are other ways. Just as it worked for you, it has been a nightmare I regret. I cannot have sex anymore. I will never have sex without severe pain and bleeding again. I was not warned about this possibility, nor did I know how many women end up with intractable pain after hysterectomy – yes it is underreported.

    Yes, women should be treated equitably in medical matters. No we shouldn’t jump into having our ladyparts cut out. There are real risks. They should not be denied just because the surgery itself is unlikely to kill you.

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    • PrettyPurplePill, I’ll also mention that I’m now disabled as a result of the psych treatments I was coerced into having prior to my hysterectomy. I didn’t mention that in the article because it was outside the scope of the writing. I am SSDI qualified disabled due to psych treatments that injured me that could have been avoided entirely if I had been offered a hysterectomy instead. I can no longer work or have sex due to the psych treatments I was offered instead of hysterectomy. And I prefer this state of disability to my PMDD experience. I hope that helps you with perspective.

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  7. I would like for there to be an effective treatment for PMDD that is not surgical, that’s why I’m promoting more research into PMDD. But currently hysterectomy and oophorectomy is the only known cure. No one is ‘jumping into having their ladyparts cut out’. I’ve interacted with scores of women with PMDD and most attempt other treatments for years prior to hysterectomy, all while many are too disabled by PMDD to work or be productive in they ways they might choose. The argument I was making is that PMDD can kill women, that is a fact. You seem to be suggesting that death by suicide is preferable to the possibility of life without sex. I’ll just let you reflect on that and draw your own conclusions.

    It is my position that women who request what is currently the only known cure be treated as autonomous adults capable of autonomous adult decision making and be granted hysterectomies if they decide they would like to have a hysterectomy rather than PMDD until they reach menopause, should they be fortunate enough to reach menopause. I am sorry that your hysterectomy went badly. Yes, some hysterectomies do go badly, but I would like for grown women to be treated like grown women who have ownership of our bodies, especially when certain bodily organs are killing us. And of course male hormonal issues aren’t treated with castration, I’m not aware of any male hormone issue as destructive as PMDD. That’s really a red herring if you want to talk about logic. And medical research pertaining to men has historically been a greater priority, but don’t blame me for that.

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    • “You seem to be suggesting that death by suicide is preferable to the possibility of life without sex. I’ll just let you reflect on that and draw your own conclusions.”

      Excuse me? I never even came close to implying anything of that nature.

      I think you laid the case out very well that women don’t receive fair treatment in medicine. I don’t think you made an argument at all that hysterectomy and oophorectomy are the best treatment for a disorder that has only been found in Western women. And even then, the science behind it is so flimsy that the treatment existed before formal acknowledgement of the disorder even existed.

      I’m thrilled for you that your symptoms abated with surgery. As to whether your experience should be extrapolated to indicate that hysterectomy is the best answer, for that I am deeply skeptical.

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      • If it is true that the disorder has only been found is western women that is because it has only be researched in western women. Discussion of the dynamics of where research is conducted is another conversation. I personally know women from Asia and Africa with PMDD. An absence of study based evidence indicates one thing and one thing only in this case: an absence of systematic research. I can’t offer statistics, that’s why I’m asking for research. You see the little loop we’re going in here? I’m asking for more research to be done and you’re responding with “there’s not evidence” when one needs research for more empirical evidence. It would be comical if we weren’t talking about a life threatening disorder.
        And I’m not simply extrapolating from my experience, I’m basing my remarks on interactions I’ve had with a lot of women with PMDD. No I did not do formal research, I don’t have the resources to do formal research hence my up front use of the word anecdotal. But you just really reinforced how gaslighting happens to people with conditions that may have existed for a very long time but are not yet well understood due to lack of research. But fortunately, this came out just a few days ago and shows me that at least researchers are interested in PMDD: https://www.nimh.nih.gov/news/science-news/2017/sex-hormone-sensitive-gene-complex-linked-to-premenstrual-mood-disorder.shtml

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      • I just realized I didn’t address how you say you aren’t implying life without sex is worse than death by suicide. Here’s how: The discussion at hand is about PMDD, which is a very profound mood disorder than has and does kill women. If you are talking about something non lethal, you are talking about PMS and we are talking about 2 different things. I do not think hysterectomy is appropriate for PMS. I have asserted that to date, the only known cure is hysterectomy. You responded with you legitimately tragic story of how hysterectomy destroyed your ability to have sex. That was the dichotomy that was set up. I’m just laying this out so that you can see how conclusions are drawn. That is all. I truly am sad for how your surgery went and wish you well. I’m going to withdraw from this conversation now, as your argumentative strategies are not productive.

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        • The problem here is that I challenged your assertion that surgery should be considered a first-line treatment because your struggles would have been prevented if you’d gotten it as a first resort instead of a last. It is extrapolation of your own circumstances, and so I responded with my own story that countered your conclusion and you seem to have taken it as a personal attack. I never questioned your, or any woman’s, right to control their own bodies. I never would. I questioned the logic that your situation can or should be applied universally. I still think that jumping to hysterectomy is a dangerous suggestion to make considering that there is and continues to be fairly widespread legitimate debate about the existence of PMDD to begin with – that it is an extreme form of PMS, something modern research continues to debunk as a Western cultural phenomenon.

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    • “I would like for grown women to be treated like grown women who have ownership of our bodies”

      I think you read more into my comment than I actually said. I too believe that women should have ownership over their own bodies. I had to fight tooth and nail for my tubal ligation at the age of 24. Even after finding a doctor to agree to perform the surgery, I had to wait 30 days after signing a state-mandated consent form. In the 14 years since, I still do not regret ending my ability to reproduce. So, yes, I understand this very well from a feminist perspective and I do think that women should be allowed to do whatever they want to their own bodies. However, that has to come with informed consent – something that happens too infrequently, whether it be for a pill or a major operation.

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  8. Then we’re actually in agreement because of course I’m all for informed consent and disclosure of risk. But I need to point out that we are actually be talking about different surgeries. You explained that your post surgical problem was with your vaginal cuff. Clearly it was serious and affected you and still affects you very badly. But to cure PMDD the cervix doesn’t need to be removed, because the cervix plays no role in PMDD. So unless women with PMDD have another medical issue, the cervix can stay, which means there is no vaginal cuff, and therefore there are no possible complications with a vaginal cuff. Of course there can still be complications, as it is major surgery, but as I think you now understand, I simply am advocating that women should be informed and granted the ability to opt for a surgical cure.

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    • No, we’re really not talking about different surgeries. There was no medical need for my cervix to be removed. It was suggested as practical by my surgeon. I have to suspect that other women have also been told of the practicality of removing the cervix at the same time as the uterus. Most women I know who have had their uteruses removed, whether due to endometriosis, pelvic organ prolapse, or for menstrual issues now called PMDD, have also had their cervixes removed since it is billed as beneficial to the woman because she will no longer need PAP smears and it nearly eliminates the risk of later cervical cancer. So, yes though our surgeries started for different reasons, my outcome could just as easily have happened to you or any woman who has been advised to remove their cervix at the same time.

      Again, I am not attacking or questioning your individual experience. But I am rejecting your basic premise of extrapolating that to other women. The fact that I’m doing it using the same anecdotal type of evidence and hearsay you are should show you the illogic of trying to convince someone of your belief by implying that all the ladies you know who happen to have the same questionable diagnosis you have agree with you.

      This will be my last comment because I’m not interested in an argument over whether a woman should be allowed to have parts of her body removed. That is a distraction. You have yet to provide clear evidence that PMDD is real or that major surgery with the possibility of severe complications should be a first line treatment.

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  9. Very interesting article. I really haven’t followed the literature on PMDD. The creation of the diagnosis came way after I had fixed my problem by getting “spayed” (I’m a veterinarian with a PhD in neuroscience and it amuses me to use that term). Until I was spayed I had a lifetime of abnormal hormone levels, very serious bulimia, and other psychiatric symptoms. I finally got to the point where I was bleeding continuously and my Gyn agreed to remove both my uterus and ovaries. I really did not have any idea that being spayed would have any effect on the bulimia, but interestingly, that intense pressure to make myself vomit any food that I ate evaporated immediately. It was very specific, because my other psych symptoms didn’t change. I was fascinated as a scientist, and of course very relieved to have that out of my life.
    However, any time I mention that to a mental health professional, I get a very complicated description of how it has nothing to do with my hormones, per se, but relates to something about my inability to accept my femininity and the hormones associated with being female. blah, blah, blah. It’s all BS. I am of course on hormone replacement therapy, but only estradiol. Over the past years, any time I try to add progesterone to the mix, those same symptoms return. Fascinating and frightening. As you point out, there is so little research about this.
    The popular perception is that progesterone is the wonder hormone and estrogen is the evil hormone. I finally found a few papers describing adverse responses to progesterone in women with extreme PMS, now defined as PMDD. It’s been a while since I looked in the literature, though, so maybe there’s more.
    By the way, I’ve experienced no complications due to the surgery itself. As with all surgical procedures, choose your surgeon carefully. My spay surgery is the only surgery I’ve had that has dramatically improved my life.
    Thanks for discussing this issue, and I agree with you that surgical treatment should be made available to more women who are suffering. But mostly, women’s issues deserve a whole lot more focus and research funding. After a 40+ year career in research, though, and seeing the decline in NIH sponsored funding and the take-over of research by pharmaceutical companies, I despair of any increased focus on women’s issues that don’t have an immediate dollar sign attached to them.

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  10. What a fascinating story maradel! I’m glad that getting spayed was so beneficial to you. It is my dream that experiences like yours can one day be more carefully catalogued and analyzed so that the mechanisms behind them one day become better understood, rather then dismissed by the mental health community as you experienced. I agree that research in general is greatly disadvantaged due to the funding issues and funding interests involved. I’m so glad your hormone story had a happy ending!

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  11. Thank you so much for writing about this. I can’t believe the research on PMDD is so incredibly sparse. I started experiencing PMDD symptoms my senior year of high school. I visited doctors who either told me to “take vitamins” or visit a psychiatrist, even though I knew the symptoms came from my body and hormones. My symptoms lessened with bioidentical progesterone and finally disappeared when I had to radically change my diet to deal with chronic lyme, CIRS, and mast cell activation disorder. Looking back, my PMDD symptoms started the year I had the 3 shot series Gardasil vaccine, and I think the toxicity from that (I have the HLA gene mutations) caused a downward spiral into long-term immune and chronic health problems. To me, it’s so obvious there’s a connection, and yet, it was so, so difficult to get help. Even when I started taking progesterone, I spent the entire following year experiencing fear every month that it would come back, and I’m still working through the trauma of both the illness and how I was treated by doctors (when I told a female doctor that I had a problem with dairy that got worse around my period, she yelled at me that I “needed a psychiatrist”). I felt totally alone and ashamed about it until I read Sylvia Plath’s journals (some scholars now believe she had PMDD). I’m glad you’re no longer suffering from this either, and I sincerely hope that someone figures out how to make more options accessible to women dealing with this.

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  12. You’re welcome, Nicole. However, I’ve learned a LOT since I wrote this. I’ve learned that a root cause of PMDD is often heavy metal poisoning. Heavy metals, such as lead, will sit at the receptor sites on cells that are meant for hormones. So the metals keep our bodies from engaging with and utilizing hormones appropriately, which can lead to all sorts of problems, including the anguish of PMDD. I’m glad you finally got validation with your diagnosis. PMDD is such a very real, physical problem involving neurology and endocrinology. If it feels right to you and is an option that you can do, I encourage you to have a heavy metals test done. When I was finally tested, I learned my levels of toxicity were very high. And now I’m getting to the true root of my problems. Here’s a good test which includes a consult: https://drmindypelz.com/product/doctors-data-heavy-metal-test-kit/

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  13. I am so happy for you but I agree. They don’t even care about the impact PMDD has on a sufferers life. I have seen so much research for men’s issues with erectile dysfunction which I am sure affects their mental health. But you see nothing being done about PMDD which is profoundly debilitating and affects all areas of the sufferers life! We are an afterthought. But if we come together and make our voices heard on certain platforms maybe then will it be researched further. Atleast that is my hope. I try to stay positive but based on the proof of how womens complaints are regarded, I have little hope and know I will continue to suffer needlessly due to this. It has been found to be extremely common in ADHD too which I have, along with MDD and SAD I have had since a child. I don’t understand as much as the healthcare system is focused on making money, that they don’t find it important to research it further based on the fact that a lot of the female population suffers with this, and know the problems it causes and the literal shutting down of the quality of life for the sufferer.
    But please be happy you feel better and that your doctor listened. Hopefully your story will be a catalyst for change.

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  14. RE: your addendum — I’m sorry to hear about everything you’ve been through. Were you given HRT to counter the effects of losing your natural estrogen supply? It’s standard practice in the UK to prescribe hormone “add-back” (and get a yearly bone density scan to check if levels are sufficient) but when I’ve spoken to my PMDD sisters in the US, a frightening number of them have been given nothing at all.

    I’ve just started Lupron (with HRT) myself. I’ve tried all the dietary interventions and I believe they only work in mild cases — they stopped working when the PMDD became more severe after a few years. This likely would have been the case for you too, please don’t beat yourself up for opting for surgery. All the best.

    EDIT: Sorry, just read the beginning of your piece again and seen that you were in fact given estradiol. What sort of problems have you been experiencing? Have you tried adding testosterone?

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  15. Hi Sarah. Thanks for reading. I wish you the absolute best in your journey. I don’t want to discuss my individual situation anymore.
    Please be aware before you proceed that Lupron can cause irreversible brain damage and other life-destroying outcomes. You can read some stories here: https://www.lupronvictimshub.com
    I also now believe that the root cause of many, if not all, cases of PMDD is heavy metal poisoning. Heavy metals like lead and mercury sit on the body’s hormone receptor sites. That means even if the levels of hormones in a woman’s body are perfect and normal, the cells cannot get the messages and therefore cannot function properly. I suspect heavy metal detox is the long-term answer for many women with PMDD.

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  16. Very well written. I struggle with PMDD too and have been thinking of so many different options, surgery included . I feel like I have tried everything to no avail, but really need to look into some of the diet and lifestyle changes you were referring to. I also have an autistic son and since learning more about autism in the past six years, I am convinced I am too. I cannot find anyone to give me a formal diagnosis, have brought it up before and was chuckled at, and have had antipsychotics, SSRIs and everything else thrown at me by an office that probably diagnoses 90% of patients with Bi Polar. It is so frustrating ! I appreciate you writing this though, shows I am not alone .

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  17. Alexis, I’m so sorry you struggle with PMDD. I hope very much you find healing. I’m also sorry that you’ve had all those drugs thrown at you while having your core concerns dismissed. I wish the absolute best for you and your son. You’re absolutely not alone. You are heard and your experiences and needs matter. I encourage you to learn about the work of Dr. Mindy Pelz while on your healing journey.

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