endo, motherhood, and a hysterectomy
By: Fela M'tima
FELA: I'm so glad we are able to chat, Jorja. Before I ask about your recent surgery, could you say your name, age, and what illness (s) you battle?
JORJA: Hi! My name is Jorja (Georgia), I am 30 years old, and I have spent the last 12 years battling Stage 3 Endometriosis (I went from a Stage 4 to a Stage 3 once it was obvious I was able to conceive). I also have a pretty impressive Panic Disorder, which I eventually came to realize was also a result of my physical disease.
FELA: You had a hysterectomy in August of this year. How did you come to make the choice that that would be the best option for you?
JORJA: I was simply over it! I was completely exhausted after battling this disease for so long, I was drained of all energy and motivation. I wanted to get it over with! I've also always been more extreme when it comes to healing/dealing with my Endo. I tried changing my diet for a few months, I did the holistic thing for a few months, but that's just not who I am.
I started researching, and then asking (and then begging) for a Hysterectomy about 4 years ago. I had already had 2 laparoscopic excision surgeries and my Endo kept coming back with a vengeance, so I knew I was gearing up for surgery number 3. The almost-annual surgery seemed just as risky (if not more so) as one final 'big' surgery. It was actually incredibly heartbreaking and infuriating, how hard I had to fight to choose what I wanted to do with my own body.
FELA: Oh, I can imagine! Though I know you're probably still recovering, have you noticed any changes in your physical state post hysterectomy?
JORJA: The most amazing thing isn't what I'VE noticed, but what others have noticed. It's my body so it's more obvious to me, but having my dad tell me (we live with my dad) how good it feels to see me so energetic, and happy, and not spending half my day in the bathroom or in bed, was really special.
I still have my right ovary, so I ovulate which means I still have some discomfort around what would have been 'that time of the month'. But feeling a little crappy for a few days a month vs EVERY day is actually a dream! It's been two and a half months and I'm no longer nauseous and dealing with vomiting or diarrhea all day, which is the biggest and greatest change. The tummy troubles are the ultimate panic trigger for me, so my anxiety has been SO much better since surgery. Besides the stomach bug I got a week ago, I haven't had a panic attack since the first 2 weeks of recovery, which is VERY impressive.
FELA: That's amazing! I'm so happy you're seeing such positive results. You were able to get pregnant before having this surgery, which is such a blessing. I'd love to hear about what that was like while dealing with Endometriosis. Was there difficulty conceiving, did your pain subside during, etc.
JORJA: Surprisingly, and I almost feel guilty about this, it wasn't that hard for us to conceive. I had a Laparoscopy in May and had my IUD removed during, we got engaged that night when I got home, we got married in September and pregnant in October! So it was a total of about five and a half months, though we only 'really' tried the last 3.
I was sick my entire pregnancy, but I can't be sure that was the fault of Endometriosis or just bad pregnancy luck. I had to take a lot of time off work because my 'morning' sickness was so bad, but the worst part was the pain from all of my scar tissue stretching as I grew. That, and my hips dislocating three times during my two day labor, but again that wasn't Endo's fault!
FELA: Having a hysterectomy at a young age can be hard on our bodies, do you have any advice on how to physical handle the changes it can bring?
JORJA: It's a little harder for me to say, as generally a hysterectomy means menopause. I was fully prepared for menopause, especially since everything I'd read and heard said that Lupron was way worse then actual menopause (Lupron was hell for me, I only did it as a precursor to my hysterectomy, four monthly injections). But for now I am menopause-free for another 30 years or so!
The advice I would give is to be patient. It's not an instant 'all better' result, which is frustrating some days! Something that has been part of your body and a big part of your life has been removed, and the rest of your insides have to adjust and get used to that! It was a month or so until I can say I felt 'good' after surgery, it was a serious recovery period, and I'd say it was another month before I could say with confidence that I was feeling better now then I did before surgery.
FELA: We also know the emotional side of the surgery can be a rough road. What made it easier on you? Any advice for women facing a similar road?
JORJA: The mental and emotional side of the recovery is big. It's bigger than even I'd expected, and I thought I'd prepared myself well for that. My husband and I talked at great lengths about not having another biological baby and the option to foster/adopt if we feel the need to grow our family some day. I spent time talking to lots of other women who have gone through it, I'd consulted a therapist as well as my doctor as far as my anxiety/depression prescriptions went, but it still hit me hard.
Especially at this age, we are surrounded by pregnant women and babies and even after FULLY deciding that I was fine with just birthing one child, I had a VERY serious melt down after one of my best friends had her second baby. When I was pregnant I knew I'd never want to do that ever again, because I hated it, and yet it still broke my heart to meet that brand new baby.
FELA: I feel that for us endosisters, chosing a hysterectomy is the hardest choice we have to make. Pre surgery, compared to post op, what has been the biggest change in your life with Endo?
JORJA: My every-day life. Lately I've had a few yucky tummy days, but it's no longer my NORM. I had to get used to NOT having to run to the bathroom every time I woke up. I had to get used to being generally productive on a daily basis!
FELA: That's so wonderful! How has motherhood been with Endometriosis?
JORJA: Being a parent is remarkably hard work...being a parent on top of throwing up and being in pain on a daily basis, it was impossible at times. All parents feel way too much guilt as they're learning to navigate through that life changing journey, but I felt it on a daily basis. I think our son had seen every Disney movie before his first Birthday, because I had no choice but to stay in bed with him most days. He got his bottles in my bed, and then eventually snacks and meals. We read our books in my bed and played with his cars in my bed, and watched Disney.
I also despised how often I had to call for someone else (a mega perk of living with my dad) to come watch him while I took shelter in the bathroom. Looking after MY baby was MY job! I'd often have to call my dad or husband from the bathroom and let them know that our son was in his bed with the iPad. That part actually gave me a lot of anxiety. There was one episode where the sick hit so bad and so hard that I had to leave him alone on the floor in order to make it to the bathroom, and called my dad crying before passing out. I dealt with some PTSD after that, and was severely anxious about being home alone with our baby, full of 'what ifs'.
FELA: Wow, that sounds remarkably challanging, and I'm so happy you have pushed through those times. Is there any advice you would give for women trying to conceive or women who do become pregnant?
JORJA: There are two things I would advise, neither are fail-free sex position tips!
Firstly, I'd say not to let anyone discourage you! If you want it, then you try! I was told I'd never get pregnant! I have so many Endo friends who are now Endo Mommies (#endomommy)! One of the most obvious symptoms of 'normal' Endometriosis is fertility issues, so it's become far too easy for doctors and the media to convince us we're shit out of luck.
Secondly, I would highly suggest setting personal boundaries that make you and your partner comfy. TRYING to get pregnant can be exhausting and utterly depressing sometimes, and I think all women who are facing fertility issues should make a plan for themselves and their conceiving journey. I have loved kids since as long as I can remember, I wanted my own parents to have 10 more because I loved having baby siblings around, and I taught in day cares and Kindergarten classrooms after graduating college. But I knew, personally, I did not want my own baby badly enough to go through fertility treatments. And I knew, personally, that my mental health could not handle disappointment over and over and over again. So after that Laparoscopy and a lot of deep discussion with my husband (who had told me years ago when I was initially diagnosed, that he was okay with not being able to have biological kids), I decided (because it's a WE discussion, but women must have the final say in what goes on with their bodies) that I would limit myself to 6 negative pregnancy tests. I was prepared to 'really' try for 6 months, and if we were unsuccessful and I was unhappy that would be the end.
I in NO way judge women who spend all of their money on fertility treatments, or who try for years and years! I deeply admire their strength! But I think it's very important that we are aware of our own expectations and our dreams in balance with our mental health and safety.
FELA: I definitely agree! We each have our own path and we should take the one we feel most comfortable with. I know its been a long road for you physically, so before we wrap up I wanted to know if you could do it all over again, would you do the same form of treatment? What would you have done differently, if so?
JORJA: Hmm. Honestly, I've always been one of those wonderfully cheesy people who believe that everything happens for a reason. Often the darkest days are those spent between 'it' happening and finally understanding why. Our baby is my why. I still carry a great deal of anger and resentment towards the doctors who brushed me off for years, especially the specialist who told me there was no way I had Endometriosis. I think they stole years of my life from me, and I'm okay with the idea of never forgiving them for that, because I don't need to. Before our son was born I'd tell you that I wish I'd found a doctor who would have preformed the hysterectomy years ago. I'd have said that I would have found a new surgeon instead of sticking with mine, who made me wait and wait for my hysterectomy. But of course, that was all in the name of our son!
Plus! It's all made my relationship with my husband remarkably strong! It is NOT easy to love and love with a chronically sick person...but for some reason he has never considered walking away. Together we have survived the very worst, and were magically rewarded with the most spectacular kid. So no, I guess I wouldn't change a thing.