endotwins talk hysterectomy with a hysta-sista
Featuring: Andie (@andiebean_)
By: Fela M'tima Dunfee
FELA: Hi Andie, I'm really happy we were finally able to make this work! I was really excited to hear about what lead you to have a hysterectomy at a young age, but before we talk about that, tell me about your history with endo!
ANDIE: I'm happy we finally made this work too! Well, when I was 12 I got my first period and it was never a normal amount of pain. My mother, grandmother, and great grandmother all struggled with endometriosis-like symptoms but were never diagnosed because, as we all are painfully aware, there isn't much help or knowledge about this disease. I would tell doctors that I was in pain that ibuprofen and Tylenol couldn't control and they would dismiss it as dysmenorrhea and never bother to look further into it, so I went on birth control and continued to struggle for 8 or 9 more years with constant pain. In that time, I actually struggled with substance abuse, which I believe had a lot to do with how much pain I was in physically, but also how these doctors were making me feel that I couldn't depend on professionals to actually diagnose me and treat me appropriately for how much pain I was in. I have three years clean on June 20th, and have effectively controlled my pain and had 5 operations in that time without relapsing because I've found a specialist who doesn't take my pain for granted. I think it's really important to advocate for women who might struggle with successful pain management. By the time a doctor would officially diagnose me 2 years ago by laparoscopy, I had so many lesions in my body that she removed close to 40 and still couldn't reach the lesions around my bowels and my bladder without a colo-rectal surgeon. Three more laparoscopies including having my gallbladder removed later, and I was still in constant pain. Leading up to my hysterectomy in April, I had bled heavily every day for four months and lost my job. One month post op from my hysterectomy and I still don't regret that sacrifice. It was the hardest decision I ever made, but I won't ever regret it.
"I had to feel like I tried everything possible before doing this surgery, and I did. I tried every shot, pill, and implant. My uterus actually crushed the mirena IUD because of the adenomyosis. "
FELA: Well first let me congratulate you on your sobriety! I can only imagine how tricky that would be to deal with while dealing with chronic pain. What sort of treatments did you use to avoid the use of pain killers?
ANDIE: Thank you! It has not been easy. The hardest thing about it is knowing when not to be a martyr about taking narcotic pain killers. I believe that if I attempted to handle immense amounts of pain without appropriate pain management, I'd be way more likely to relapse out of frustration. I use pain medications carefully, and try every other possible method before resorting to them. Last year alone, I was in the ER more than 50 times because of uncontrollable pain. It's really depressing when the entire ER staff knows you by name! But I have a ton of support and I wouldn't be able to do it without other people in recovery helping me. I always have someone else administer my narcotics to me and I've worked out a really effective system by just being honest about how much pain I'm in and what I need. My normal pain routine is 3 toradol shots weekly, gabapentin, and Tylenol with muscle relaxers or narcotic pain medication as needed, but normally I can make it work as long as I stay on top of my pain. If I miss a dose of Tylenol, that's when I end up in the ER. Sticking to your regimen is key!
FELA: It is so important! I can really relate to the ER experiences, too. I'm so glad you've been so brave to better yourself in so many different aspects of your life regarding your health. So only one month post op, what have you noticed about your body post hysterectomy? Did you have a full or partial?
ANDIE: I had a total abdominal hysterectomy so I lost my Fallopian tubes, cervix, and uterus. I kept my ovaries to avoid a lot of health risks associated with removing them at such a young age. I'm still ovulating which causes a lot of pain, but eventually that will settle down. The hardest thing about the hysterectomy is to remember that this disease is chronic, and even though I took the extreme option I still have it. My official diagnosis is stage four endometriosis, adenomyosis, severe dysmenorrhea, deep dyspareusia, pelvic inflammatory disease and chronic pelvic pain disorder. So this surgery really only eliminated the adenomyosis completely. I had to feel like I tried everything possible before doing this surgery, and I did. I tried every shot, pill, and implant. My uterus actually crushed the Mirena IUD because of the adenomyosis. My body was rejecting everything! And with that huge diagnosis, my chance of fertility was less than 1%.
One month post op, I am trying to find my new baseline of pain. When I get to 12 weeks post op, I will start seeing a chronic pain specialist and pelvic floor physical therapy to attempt to soften the scar tissue. On the brighter side, I am not in constant level 9-10 pain. I can walk, even to the point of exhaustion, without needing to spend a week in bed or feeling as if taking a walk to the grocery store is my one outing for the week while I sacrifice the rest of it in bed or in the hospital. So it's not a cure, it's a starting point. It's a chance for me to be able to effectively handle the flare ups without constant surgeries. It's just figuring out what your body needs after such a major surgery that's complicated.
"People don't realize that being in pain constantly with no end is extremely traumatizing."
FELA: That's incredible! I can relate very much to all of that because that's almost exactly the same surgery I'm having in a few weeks and I'll be doing the same things post op to help keep myself on the right track. Adenomyosis is such a bitch, too! Though you've kept your ovaries, have you felt any hormonal changes? And if so, how do you manage them?
ANDIE: Good luck to you! The most important thing after a hysterectomy is to take it easy. Don't do anything to push yourself or it's a huge setback. After surgery, my ovaries being the little assholes that they are decided to go into shock. During a hysterectomy, the surgeon gently moves them out of the way and they do NOT appreciate that. I had menopause symptoms, night sweats, hot flashes, and chills. It settled down recently, I'd say it lasted about three weeks before the symptoms stopped. I feel a lot more level emotionally, without the constant estrogen pumping and month long cycles, its been an adjustment but in an amazing way. People don't realize that being in pain constantly with no end is extremely traumatizing. Coming out of that with pain that can be managed is a huge healing experience. I've had so much counseling to help me with the trauma of chronic pain. My counselor actually had the same surgery for endometriosis so I feel very comfortable with her and she's helped me figure out what's the hormones, what's the trauma, and what I can do when I feel completely helpless.
"I always knew it would come to this, but when it finally happened I felt like I had a huge weight lifted from me (and 130 grams of evil uterus taken out of me) and when I woke up from surgery, there wasn't a doubt in my mind that I had made the right decision, for the hardest decision I've ever made, I made the right one. "
FELA: That's wonderful that you have that support! Sometimes our physical pain is so intense (and traumatic), we forget about how important it is to nurse ourselves emotionally. What do you do in your day to day to help the emotional aspect of living with such a debilitating disease?
ANDIE: I've learned to listen to my body and not to feel guilty for all the things I can't do. I like to use the spoon theory, it helps me out day to day and helps my loved ones understand a little better. When I have days that I can't get out of bed, I make sure I talk to at least one person that day so I'm not isolating myself. I do the things that make me happy that I can do from bed like crossword puzzles and reading. When I can go out, I treat it like the miracle it is and feel grateful that I made it a few blocks to get groceries or go to the thrift store or even just pick up take out. I try not to feel the 'ugh, I only got to do this one thing today, I'm lazy and worthless', but instead try to thank my body for letting me feel well enough that day to accomplish something out of bed.
FELA: That's a wonderful way of looking at it and such positive thinking! I think we can all tend to isolate ourselves which can really cause some intense depression when chronically ill. What would be your advice to women who are young and debating hysterectomies due to Endo and/or Adenomyosis?
ANDIE: Well, like I said I wanted to feel like I explored every possible option available to me before making that choice. Giving up your uterus is sometimes not the best way to go and I have a feeling it would have been a lot harder to recover from emotionally if I felt that it was a rash or abrupt decision. I got to the point that I went to my surgeon, bawling, saying I couldn't take it another day. By the time I made it to that pre op appointment, I had hit my rock bottom with endometriosis. I was hospitalized more than I was at home. I am not saying every woman should let it get to that point, but saying out loud to my doctor that I can't live like this anymore and him agreeing with me was like an awakening. I always knew it would come to this, but when it finally happened I felt like I had a huge weight lifted from me (and 130 grams of evil uterus taken out of me) and when I woke up from surgery, there wasn't a doubt in my mind that I had made the right decision, for the hardest decision I've ever made, I made the right one. If you are considering this surgery but can't see yourself waking up afterwards with confidence that you can live a happy life, just keep thinking about it. Don't jump to the decision to have a hysterectomy. But if you do decide to have it done, just take it slow afterwards. Remember that you can't get it all back in one day, there might still be pain, but there will also be a lot brighter of a life available to you without constant hospitalization as long as you have a solid plan for taking care of yourself afterwards. It's not just over with, I have the rest of my life to be a warrior against this disease, and now I actually feel like I'm winning, which is something I've never felt before!
FELA: Hell yes! I love your response so much and feel that even I, who has already made that decision, needed to hear that so thank you so much. You are quite the warrior, Andie.
ANDIE: Thank you for taking the time to talk with me! And I wish you all the best with your surgery, I bet you're going to feel so great when it's over with.