Hi, I'm Neith, a 37 year old in Massachusetts who has her consult with a surgeon in one week and hopefully will be able to have a total (cervix or not?) laparoscopic hysterectomy shortly thereafter.
I'd love to talk with others who have a similar health history and have undergone a hysterectomy! I am so lucky to have a loving husband and three young teenage children (the 15 year old son will love the independence of having me out of his hair while recovering and hopefully the 13 year old twin girls will cuddle or get lost as I need them!)
What I'm hoping for most from the surgery is to be done with the monthly abdominal pain, massive migraines, excessive blood loss, anemia, days in bed, and taking weeks to recover from each period only to start it all over again shortly aftewards... but it would be a dream come true if the surgery also helps with my other health issues or at least doesn't worsen them!
Medical issues that keep weakening my system or need constant care:
- Iron Deficiency Anemia - I've had a few iv iron treatments and oral pills just give me bad side effects without much help
- Vitamin D Deficiency - I took a round of large doses of Vitamin D and now am on a smaller daily dose for the foreseeable future
- Orthostatic Hypotension - For 11 years now I need to be on blood pressure medicine or my blood pressure swiftly drops to 35/0 if I'm kept upright.. it's hit or miss with how much my medication fixes this and in the past I was still bedridden for a portion of each month (often surrounding my period) but switched medication 2 years ago and am on Midodrine every 4 hours when I plan to be upright
- Migraines - I get these every month with the onset of my period (along with plenty of other pain and disorientation) but also from allergens, lights, sounds, shifts in medication, etc... the worst one lasted for 6 full months
- Chronic Sinus Infections - Zyrtec and Azelastine have helped prevent these recently but I still get very painful sinus infections that evade treatment and cause me to be stuck in bed while active, along with weakening my body... hopefully I will be able to have sinus surgery after recovering from my hysterectomy since my sinuses are underdeveloped and blocked by a bone cavity
- Tricuspid Regurgitation Heart Murmur - Mostly this just means that I need antibiotics for dental visits and surgeries, but it also means that my blood isn't always being cleaned and replenished properly and if I remember correctly it also means that things like histamine can build up and build up along with other things
- Dehydration & Low Salt Levels - No matter how much I fight it, I'm very often in a state of dehydration and my body needs salt supplements
I'm hoping that once I'm fully recovered from surgery my body will be stronger and without losing so much blood each month or going through all of the pain, I will maintain a larger blood supply that actually nourishes my other organs properly.
The hysterectomy decision came after the bouts of anemia and finally asking for help with the increasing pain and excessive blood loss I go through during each period. My gyn performed a hysteroscopy and found a large but benign endometrial polyp, removed it, and performed a d&c but there was no improvement afterwards and it's my understanding that polyps are likely to grow back with any other treatment, with treatments reducing or possibly eliminating the blood loss but not necessarily the pain and I don't want to undergo repeat surgeries... I'm ready to remove my uterus and move on.
I also have a family history where many of my male ancestors (on both sides) have had ALS and/or Parkinsons, with an aunt who has MS. Orthostatic Hypotension and some of the side effects that my doctors have attributed to it are known to sometimes be early symptoms of each of these diseases, but they usually progress within a few years.... so far my spinal taps and neurological exams don't show anything else that indicates either of these three diseases, but without a known cause for my hypotension and all manner of small symptoms that it causes, its always in the back of my mind that I could be following in their footsteps.
Anyhow, I'd love to hear from anyone with a similar history and know what helped you before/during/after surgery as well as any improvements or problems that resulted from it. Also, if there's advice for my 13 year old daughters to help them understand my surgery as well as how to support me I'd love that
I found the general article about how to help out a woman post-surgery on this site, but if there's anything aimed at middle school kids I'd love that! They are still prepubescent and are always asking about the changes that they will be going through soon and know what I am going throught right now.