My Latest #Hysterecovery Update

I haven’t posted an update on this recently, so let me remedy that today.

I had my surgery on January 10 so I recently passed the four month mark. In terms of the actual hysterectomy, I’m doing pretty good. No significant physical problems with the exception of having to pee a lot more often and sometimes taking a long time “to void” as the nurses like to say. If that doesn’t resolve in a few more months, I’ll be referred to the pelvic floor folks at AHN who have all sorts of tools from abdominal physical therapy to surgery.  The problem, as I understand, is that the uterus was between the bladder and the bowels and helped create pressure to empty the bladder. The body doesn’t like an empty space so things are rearranging themselves slowly to fill that space the uterus previously occupied. As far as PITA side effects of surgery, this ranks pretty low on the awful scale.

I have almost no pain now and when I do, it is managed by ibuprofen/tylenol.

It is weird to go without menstruating for four months after being semi-regular for 34 years. I feel different and the same. Sometimes I think “do I need tampons?” and have to remind myself that I do not. And sometimes it freaks me out to realize I have a vaginal cuff instead of my original repro parts. That’s purely in my mind because there’s no discernible difference between a cuff and a traditional vagina.

The more difficult thing is figuring out my cycle. Since I have my ovaries, I still have the hormonal impact of ovaries producing progesterone and estrogen (and releasing an egg which is absorbed by the body.) It takes a bit for the new cycle to kick into regularity, but I’m at a loss as to how to assess it. Or if I need to know, really?

Let me add something very important here – it is so, so important for anyone who menstruates or was born with a uterus and ovaries to continue a regular relationship with a gynecologist or other healthcare provider. I would say about half of the folks I’ve spoken with about hysterectomies made assumptions that they were in menopause and then realized they were wrong when they experienced symptoms. If you still have your ovaries, you need a regular internal exam even without needing a PAP smear. If you hit the 12 month with no period mark and still have your uterus/ovaries, you need to meet with a medical professional to confirm you are in menopause. Consider Planned Parenthood which has lots of wellness services available.

With the state of healthcare, you may not want to risk ending up running around for tests, exams, and waiting while you are in pain because you misinterpreted skipped periods as menopause. Having an exam after you’ve missed a few months can help improve the likelihood of detecting problems before they become soul crushing pain.

I don’t have that 12 month no period guide so I’m going to have continue having annual exams to monitor my ovaries. Yay!

Unfortunately, the impact of this whole ordeal on my mental health has been hard. I was pretty sick for three or four months straight and in pain quite a bit. My January surgery was relativel fine with ‘only’ one trip to the ER, but I was cooped up at home during brutal winter conditions for months.  I was very lonely. That experience of being isolated and cut-off was traumatizing.

Add to that, my therapist had just left Persad at the end of December so I had to start a new therapist relationship after missing almost a month of sessions because of the surgery (I couldn’t drive myself.) My new therapist was nice, but it quickly became apparent that she had little to no experience in trauma or PTSD. So in late April, I switched yet again and am hopefully now matched with someone permanently. But I’ve lost about five months of supports.

I’m now struggling with depression and anxiety symptoms. They weren’t caused by the surgery, but the situation around the surgery certainly contributed to them. One reason I am writing this post is to remind myself that my hysterectomy was fine and that most of my apprehension now is a result of mental health symptoms, not actual physical symptoms.

No one really talk about the trauma of a hysterectomy for survivors of sexual violence. My new therapist does which is fantastic. But I wish my gynecologist had talked with me about it. If we can have an in-depth discussion on life long use of stool softeners, we should talk about the other tough issues, too. Actually, I wish AHN permitted my gynecologist to call my psychiatrist and have a 10 minute phone conversation about my case. Imagine! (Hint – that’s not billable!)

But I’m struggling right now. The ridiculous weather swings and the allergies aren’t helping. What does help is talking about it. Talking with my therapist, my psychiatrist, my partner (<3), and with my friends & readers. Using my tools, paying attention to what’s going on, and so forth.

What does not help is being diagnosed by well-meaning friends who have theories on menopause, mood disorders, etc.  Please, please listen without offering up advice or suggestions unless specifically asked. Show up when you promise to do so. Know that isolation is a tough challenge to address.

If you’ve had a hysterectomy and are experiencing symptoms often found in depression or anxiety, please get screened.

I’m certainly glad that I had this procedure, but regret how much I underestimated the impact it would have on my health and my life. It is not clear what else I could have done to prepare because of the constraints of the systems. If I had to create/invent a few supports that would have been helpful:

  1. My Allegheny Health Network providers having a nurse call me at 2 weeks, 4 weeks, 8 weeks, etc to talk with me about my recovery and specifically asking about my mental wellness.
  2. Persad Center having at least one staff person who can also offer telephone supports for patients like me who are limited due to physical health reasons. Even if not all therapists can do it, training ONE to do it could have a huge impact. It doesn’t have to be a full counseling session.
  3. In-home Physical Therapy. I had previously injured my shoulder which is what led me to realize I needed a hysterectomy, but also meant I had to stop PT for a long time. Getting back to PT has been a challenge, first because of the physical constraints and now due to the anxiety. Had I been able to have even just a few sessions of in-home PT while I have been recovering, it could have made a huge difference in both pain management and getting back to the office.

So a few new challenges to overcome on this journey, but general overall progress for me. One bright spot is that I met my health insurance deductible on January 10 for the year so I’ll have very few copays for the rest of the year. On the down side, my bills from the procedure are still being processed by Highmark and Medicare so I still have no idea what I owe nor can I begin making payments against it. That’s a system I won’t even bother to suggest change.

Don’t forget to consult HysterSisters for lots of support and information.

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