Kidney — TransplantLyfe

Kidney

For the Ladies

PoisonRose21Transplant Patient
June 16, 2022 in Kidney

Hi Ladies,

My apologies for the long post, but I didn't want to leave anything pertinent out.

I wanted to share with you my recent "Misadventures" to see if there might be someone who has gone through something similar which has highly disheartened me.

For the past three months, my monthly period has gotten progressively heavier. The last one in the end of May was the worst yet. I knew something was wrong when I was easily fatigued, I had episodes of light-headedness, shortness of breath and just general tiredness all the time. I called my Transplant nurse and told her how I'd been feeling and asked her to send a request to my local medical center for a hemo lab test to see if my suspicions were right. My suspicions were confirmed. My hemoglobin dropped almost 3 full points (down from 10.7 to 7.9) due to the loss of blood.

I also went ahead and had an appointment with my OB. She talked about my options. She wanted an ultrasound done to take a deeper look and I was going to get an IUD, that my Kidney team approved, inserted. Long story short, On my visit on the 7th, it was determined I can't have an UID quite yet. The ultrasound revealed that my walls are 7x thicker than they should be which explains why my periods are so heavy.

I just, as in this morning (June 15th) had a Hysteroscopy, with a procedure called a D&C and if that had gone well I would have had Mirena inserted to help slow and maybe eventually stop my bleeding.

Surgery did not go well, my OB couldn't complete the C&D, a polyp was found and removed so the IUD couldn't be put in. I am now going to have schedule a second ultrasound for two weeks from now... The want to see what's going on. It's truly beginning to sounds like my OB wants to do a Hysterectomy as my walls are so thick and she's worried it wont stop the heavy flows... And it can potentially lead to a more significant drop in my hemo to the point a transfusion would be necessary putting my barely year old kidney at risk (My Transplant was June 11, 2021.)

Mt Transplant team also deemed it necessary for me to get two iron infusions as my iron stored dropped to 6% where it should be at about 20-30. One infusion is scheduled for Friday morning, after that I'll need the second one within a week from then. Oh, and my RBC was only at 2.84.

Have any of you experienced anything like this and had the result be this drastic? I'm very disheartened that a major surgery may be necessary as I've already been put through the ringer with the heavy cycles, ultrasound and now a failed procedure. I have missed a LOT of work the past couple weeks to deal with this and knowing more is needed is bringing me down. Any words of encouragement and thoughts are really welcomed at this point.

1 - 5 of 5 Replies

  • AliEm14Expert
    Transplant Patient

    This is so frustrating, but I'm so glad you're pushing for answers. I fought for so long to have someone take my concerns seriously, and to actually pay attention to the connection between my transplant and my cycle. transplants and the female body in general are so understudied, according to what I've found from my own doctors and research.

    In my experience transplants can amplify the other things going on in your body. You really have to advocate for yourself and do your own research. I'm liver transplant so not exactly the same but I've found where I'm at in my cycle highly influences where my hemoglobin and RBC levels are, and my liver enzymes. I've learned to never get labs done on my period because my numbers will be insane, everyone will freak out, and things always settle down once I'm not bleeding anymore.

    For me personally, birth control made things far worse. I had surgery where they ended up removing my tubes, and a layer of my uterine wall. Transplant wise they had to take me off blood thinners so my blood could actually clot properly. I also find it is highly influenced by how well my transplant is managed, stress, diet, exercise...

    I'm so sorry you're going through this. It's so frustrating, and I wish there were more answers anywhere. There needs to be more research and advocacy so patients don't have to suffer.

    June 16, 2022
  • AnnMarieCare Partner

    Wow this is so hard to read because I understand the added stress and fears. Please keep us posted @PoisonRose21

    June 21, 2022
  • KarinExpert
    Transplant Patient

    Dear @PoisonRose21 this sounds so awful and I am so sorry for you / I understand the issues and especially the effect of low Hgb on your kidney fct - I am facing something similar but a hip surgery is the looming issue for me! Stay strong and try to get your values higher by accepting the transfusions and perhaps aranesp or other epo variant?

    June 23, 2022
  • PoisonRose21Transplant Patient

    @AliEm14, @AnnMarie and @Karin,

    I'm sorry my response has taken so long. I'll make this short and sweat. My OBGYN had an ultrasound done and then I went in for a second before they did a DnC. I was told by my OB in the follow-up visit that she couldn't get out much tissue in the Dnc - maybe 1/2 a cm. She says that a lot of the remaining tissue is likely scar tissue developed during my pre-transplant journey from NOT having a menstrual cycle for over 4 years. There was also fear that a polyp was under there and she didn't want to cause a bleeding issue. She said that her next move would be a hysterectomy. But given my complicated medical history and the bleeding problems earlier this year she decided to reach out to the U of M Gynecological Cancer Center to a former colleague who is the director and see if there is another procedure that isn't very invasive. Well turns out she agreed with my OB and recommended a partial hysterectomy. That was scheduled and is taking place tomorrow with the hopes it can be done laparoscopically so it wont be so invasive and it's an out patient surgery. However, if they find too much scar tissue and it gets in the way they will do open surgery. This will require a 2-3 day hospital stay. So I'm hoping it can be done laparoscopically and I can go home that afternoon.

    August 31, 2022
  • ShelbycreatesExpert
    Transplant Patient

    @PoisonRose21 I’m so sorry you’ve had so many complications! I had trouble with my menstrual cycle last year. My bleeding was really heavy and they kept telling me to go the ER (in the height of COVID because they didn’t have appointments and I refused). My hemoglobin dropped significantly and I ended up having to get iron infusions as well.

    My cycle did begin to even out, but I still have weird cycles. Lately my bleeding has been much lighter but lasting 2 weeks!

    Please keep us posted on your recovery!

    August 31, 2022
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