Pulling the trigger
by Jillian Bogater (Exile From Hysteria)
I’ve just pulled the trigger to end my relationship with my uterus.
After a half-hour meeting with my gynecologist, and revisiting my ongoing struggles with endometriosis, I have decided to proceed with a hysterectomy.
Getting here was not easy. But armed with a notebook full of questions, saying the words was much easier than I thought.
Once the surgery is scheduled, I will receive a phone call telling me the date. My doctor said she expects it to be either the end of February or early March.
I will have an abdominal hysterectomy, meaning they will cut my belly open (“at the bikini line”) to remove my entire uterus and cervix. The surgery should take two to three hours, depending on any complications from my endometriosis scar tissue. The gynecologist said she hopes to leave one ovary intact in the hopes that it will produce enough hormones to prevent me from going into premature menopause. If the ovary fails to work, I will evenutally go on hormone replacement therapy.
After the surgery, I will stay in the hospital for two to three days. Then I will spend the rest of my recovery (about six weeks) at home.
This is starting to feel real. That I will have surgery. That I may finally find a solution to my chronic pain.
My boyfriend Matt (who kindly accompanied me to today’s appointment) asked helpful questions, specifically about the number of women who find pain relief through a hysterectomy. My doctor was frank. She said I had a 50 percent chance of living pain-free after the surgery. She estimated that 25 percent of women experienced some form of relief (even if temporary), and that 25 experienced no change in their pain level. She repeated that a hysterectomy was not a guarantee that I would finally be free of my chronic abdominal pain. But after a diagnostic laparoscopy five years ago, and a steady increase in pain … my doctor said this was my best option.
And although the odds aren’t tremendous, they are good enough that I’m willing to give it a shot.
NOTE: The doctor suggested two Web sites for helpful hysterectomy information: The American Congress of Obstetricians and Gynecologists and Web MD. I have added the hysterectomy pages for both sites to my Resources page.
I’m impressed that your doctor was so honest, what more can you ask for than that! For me healthy eating and exercise helped mt to manage my pain to some so I would personally strongly recommend you do the same as I have no doubt it will help. I had my Hysterectomy in late October 2012 and have no pain 🙂
I’m so glad to hear of your success! Diet and exercise will play a large role in my ongoing recovery. I really love my doctor, and value her honesty. Wow. This is happening!!!
Thank you for visiting my blog. I had my hysterectomy when I was 24. “Pulling the trigger” is a very hard place to come to and I admire your srength and courage. I will say that, for me, it took several years for the pain to stop complelety. However the relief was almost immediate, the pain diminished to a much more manageable scale and then just faded away. My quality of life was IMMEDIATLEY better, so take heart! I would say that my decision was well worth it! Hang in there and thank you for sharing your story!
Thanks for your note! I am very hopeful that I will find some relief through the hysterectomy. It’s worth taking a chance to me. Worst case scenario, I am stuck with the pain I currently have. At least that’s a monster I already know.
I ended up having an emergency hysterectomy after more than 20 years of agony. I put up with the pain for the hope of having a second child. My first child came to me after many years of failed pregnancies due to the damage and interference from the endo. I didn’t want this procedure, but my body made it so. That being said, I had the same procedure you are describing and my surgery took over four hours because my gyno scraped and scraped and scraped some more of that horrid tissue off other organs. I was hoping to have kept my one working ovary, but that hope was dashed when she got in and saw all the damage. I’m so glad I left that decision up to her to make. Needless to say, I started estrogen the next day!! I haven’t had a problem with the estrogen and only a few hot flashes and night sweats…..the norm!!
I gotta tell ya Jillian, my pain diminished SO much. I still have some endo left in me and even though I can feel the discomfort at times, it is nothing like it used to be! It has been such freedom from the daily, hourly pain!!
When I woke up I could notice the difference right away. The only pain I felt was that of the incision and discomfort from having my “innerds” messed with…….but that other nagging breath-robbing pain was GONE!!
You hang tough and be positive and I have every faith that you will be in the group that does feel this glorious relief!!! I, too, am impressed that your doctor was so honest with her answers….I find that the sign of a compassionate doctor that she isn’t candy coating everything.
Hugs and much love……
Char.
Thanks so much for sharing your story Char. I’m so glad I don’t feel alone on this journey. It means so much to have friends like you by my side. 🙂
Always and in all ways, luv!!
Jillian,
What a difficult decision! I am glad you made an informed and educated one. I wish I was close by; I would bring you dozens of donuts!!
My only advice – strengthen your abs as much as possible before the surgery — it will make recovery so much easier!
Love you dear friend,
Erin
Thanks Erin. Big hugs!!!!!
Jillian,
I had the hysterectomy almost 10 years ago. Uterus, cervix, ovaries, tubes and 7 lbs of endometriosis. I even had endo outside of the abdomen attached to my muscle and in the fatty tissue area!! Outcome? I LOVE it! No pain, no backaches, no periods, and my feet don’t hurt anymore! I didn’t realize how much pain I was in [for 15 years] until the day after surgery. My Doc said removing the ovaries would be best since it is the hormones that grow the endo tissue. I took hormone replacement for about a month but decided I would stop. Hormones are better for your heart and bones but are a risk for breast cancer and more endometriosis. (but that is just me, you will find what works for you) I have upped my calcium intake and should do more weight barring exercise but I don’t notice any side effects.
Three suggestions:
1) ask your Doc about what she does with the bladder. My Doc did some kind of bladder lift [because there is a lot more room in there now] he attached it or tied it to something. It will help later in life.
2) If you are on anti-depressants, consider upping your dose for a week or two. Especially if you have anxiety symptoms when you forget a dose. The antibiotic, pain meds, anesthesia, or combination reduces the effect of the antidepressant. This happened to me and I had a major anxiety attack by the end of the first week. Thank God my mother suggested upping my dose – it did the trick.
3) Your pillow is your best friend. Press and hold it to your abdomen when you sit up, move, take a bowl movement. It will help. You will have gas pains in the strangest places…I found rocking – with the pillow – especially side to side, really helped.
Good luck, having faith in your doctor is a big plus. I’m betting you will be in the 50% that finds relief.
Vicki Iseler
(((Vicki)))
What a great letter. So much useful information. I’m especially interested in your comment about the bladder lift. For years I have had a problem with incontinence, and asked my surgeon if endo could be causing it. A bladder lift sounds like that may help, as well.
I also love your suggestion about the pillow. I plan on having one on hand for sure.
I’m so glad to hear the hysterectomy brought you relief. And so quickly. This gives me so much hope!
Hugs!!!
Hi sweet friend,
This is a wonderful blog, and obviously resonates with lots of women. I love reading the success stories. It seems only logical that your pain would diminish at least somewhat! How can it not? My mom had a bladder lift years after having children and a hysterectomy, and she loved the results. She did not have endometriosis, but things has just moved around. It was pretty invasive, so I think the suggestion to talk to your doctor about it now is a great idea. I cannot imagine having such chronic pain, and I will be there for you in any way possible. Love, Laura
Laura, Thanks so much for your kindness. I value your friendship so much. It means so much that you have been here for me. Much love, Jillian
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I had left ovary and Fallopian tube removed through large bikini line incision because of chocolate cyst and endometriosis 2 years ago. I still have chocolate cysts on that side due to remnant tissue. Recovery wasn’t ad but my gynae doesn’t believe hysterectomy will help me. Spring 2011 I was diagnosed with primary pulmonary hypertension so not allowed elective anaesthesia so now have mirena. I wish you the very best of luck with it. Keeping everything crossed that you are in the pain free group. Touch wood.
Thanks so much for your kind words. Your journey sounds long, and complicated. So familiar. I hope you are able to find reprieve from the pain even if a hysterectomy is not possible. Hugs…
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It’s wonderful to hear about a doctor who is so honest and supportive in helping you make an informed decision. I really hope the surgery helps you. I have endo as well, although not nearly as severely as you or the other commenters here (my pain is kept almost entirely under control with birth control to eliminate my periods) and I can only imagine how draining and awful it must be to have the kind of pain I remember from my teens all the time and for years on end. Good luck to you!
Hi Sarah! Thanks for your kind note. Yes, I am so grateful for my doctor. She’s a straight-shooter, and I value that. I’m crossing my fingers that this surgery will bring some relief….
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