I’m offering this post to clear up some misunderstandings related to my 2 Years PMDD-free post. I understand that the words I chose may have facilitated the misinterpretations that some people had of the piece.

My first priority is to advocate for more research into PMDD. I would very much like for non-surgical treatments or cures to be made available to women with PMDD so that we do not have to resort to surgery. But with that being said, presently, hysterectomy and bilateral oophorectomy is the only known permanent cure for PMDD, and I think that when a woman with PMDD requests surgery, her request should be taken seriously.

I don’t think hysterectomy is desired as a first line treatment by many or perhaps even any woman, and I am not advocating for ‘handing out hysterectomies’ or ‘ripping out uteruses’. I do think, however, that a woman whose very ability to live is being compromised by PMDD should be able to have an adult discussion with her treating physician about the possibility of surgery. I do understand that a hysterectomy is a major and irreversible surgery and like all major surgeries, comes with some degree of risk. I also understand that it is not appropriate for and cannot be undertaken by all women. I know that there are lots of factors to consider in such a decision. I would hope that any capable physician could address these issues and concerns when meeting with the patient affected by PMDD.

I also never stated there was a definitive link between autism and PMDD. There is no research into correlation or causation between autism and PMDD that I am aware of, which is why I characterized my discussion of it as anecdotal. The possibility of an underlying shared mechanism between autism and PMDD crossed my mind after numerous discussions I had with other women who are both autistic and affected by PMDD. I never said it was scientific. I am asking for studies to be conducted to prove or disprove a relationship.

The same thing applies to my question as to whether PMDD is an expression of an autoimmune process. It’s a question that has crossed my mind, I can offer no evidence in support of my hypothesis. I said that clearly. I would love for research to be conducted to determine whether my thought process is correct.

The bottom line is I want more research so that women with PMDD can have more options for treatment. I want women who complain of PMDD to be taken seriously by their health care providers. And I want women who do ask for hysterectomies to be treated as autonomous decision making adults who are capable of having a discussion about the pros and cons, and risks and benefits of hysterectomy with the physicians who are treating them.

I would actually be delighted if any or all of my speculations about PMDD causation were proven wrong, because that would mean that someone is actually doing some research. I want women with PMDD, both neurodivergent and neurotypical, to be able live the lives they envision for themselves. I want women with PMDD to have their happiness and equanimity restored, but more critically I want the women with PMDD and their families to no longer fear losing women to preventable suicides. I want the medical community to take the complaints of women with PMDD seriously. If those things happened and every single thing I’ve ever said about PMDD turned out to be wrong, I’ll be overjoyed.

Twilah H is a recovering patient. She studied Philosophy with a concentration in ethics at the University of Kansas. Through writing, meditation, relationship building, and quilt creation she has found a place of peace.

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