Angela Kawakami

Endometriosis and Hysterectomy: Reality and Recovery

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I told the surgeon I wanted a hysterectomy. I wanted it all out. I was done. I wanted closure and I just wanted to stop being touched. I was so tired of the pain. I was so tired of being violated for the last 24 years with multiple tests, TVUS, Leeps, colposcopies, etc. We don’t talk about that much, how violating the medical testing for endometriosis and other female reproductive conditions is, but we should. The anxiety and depression from the endless medical assaults is real and damaging.  I wanted it all to end, and so, I scheduled my third, and hopefully final, endometriosis surgery along with a radical hysterectomy for May 9th 2014.

When I left my surgeon’s office, I think I was in shock. With all that had happened to me, finally someone listened. I was ecstatic, to say the least, and I couldn’t wait to update everyone who had been rooting for me. Thank you nurse intern – you made huge difference.

Pre-Hysterectomy Panic

As the date for the hysterectomy drew closer, I started to panic. It was the kind of panic you get from fighting too long and starting to wonder “Is this really what I want done?” I had suffered for so long that I started to doubt myself.  If I am honest, the hysterectomy was not only for mental closure, but for physical closure as well.  It took me three years of having to fight just to be listened to, for someone to acknowledge that my pain and my disease were real.  This surgeon is one of the best in Canada but his time doing surgery was slowly ticking away, since now he is at a teaching hospital. I trusted him and only him to do this surgery. I had no desire to be butchered by another surgeon.

I was nervous about being put under. I have TMJ and it had gotten a lot worse since my last surgery. With TMJ, I was afraid that they would break my jaw trying to put the tube down my throat. It seems really silly to worry about that, but my jaw is just as painful as the endometriosis at this point, if not more painful.

Prior to the surgery, I decided to do a bowel prep as it was a possibility that my endometriosis was not fully removed in 2007 from the rectovaginal area. It was a good thing I did. This is the second time that I have made this decision on my own and just in case. In the end, it was needed.

Hysterectomy Day

The day of surgery I was no longer panicked. I just wanted answers. I was certain there was a partial bowel obstruction and I was sure that my ovary, tube and ureter were stuck to the pelvic wall but not sure about the endometrisosis because my last surgeon said it was only superficial. I would hate to have gone in and nothing was there because then that would have meant previous surgeon was right, that I didn’t have endometriosis.

Before walking into the operating room my angel of a nurse was there for me to make sure my surgery was not cancelled. She was there for me if I had any questions or concerns. I was so touched by this gesture as she didn’t have to be there.  I signed off on the endometriosis research study paperwork, which I was excited about. I think it’s important for more research to be done with this disease.

I walked into the OR and was told to lie down. This is always the weird part. I don’t always seem to remember much about what happens except for the last minute or so. I got up on the table and had my legs in straps. The surgeon came around to talk to me while they were putting on all the monitors and was calm and reassuring. However, I did ask again if they were going to check for recto-vaginal disease and he said “yes” then said “Did you do a bowel prep?” Yes, I did, even though no one told me to. That was good news.

The Surgery and Post Op Pain

My surgery lasted two hours but I was in the recovery room for another two hours trying to get the pain under control. Finally, after the first hour and after I kept telling them that I was a tremendous amount of pain, the nurse came in.  She looked at the chart and she made me smile when she said “Who gave this dosage for this patient? It must have been a man because it’s such a low dosage no wonder she is in so much pain for what she had done. Bless her. “

After the proper pain medications and dosage, the pain subsided some. I was brought into my semi private room to recover. There was no way I could go home with this pain, especially the bladder pain, which was excruciating. I was passing gas fine but about five hours after surgery they wanted to take the catheter out. UGH. I begged them not to as I could feel my bladder spasm continuously; however, the nurse took it out anyways.  About an hour after she took it out I still could not urinate and the pain was becoming intense.

I was bawling my eyes out when the nurse came in, but all she did was tell me to keep trying. It was torture. Finally, she got a hold of someone in the urology department that told her to put the catheter in to drain the urine and try again. Well, it was what I expected, as this has happened before. I could not go again, and finally, after another hour she had the urologist come up and examine me. She said to put the catheter back in for good and let the bladder calm down. Seriously? Could they not have just left the catheter in in the first place? Sometimes I question what people are thinking.

I had blood in the catheter bag for about eight hours. Eventually, the blood cleared out, but I was still having bladder spasms. I didn’t sleep through the night and I was barely getting any pain meds to help with the pain. I think I was given two Tylenol 3’s every two hours and one oxycodone every for hours. Needless to say, I wanted to die right then and there.

The surgeon came in the next day in his street clothes on his day off. He was very nice and polite but still there was a part of me that wanted to slap him still because of what he put me through the last three years.  We could have avoided all of this pain if he would have just recognized that my endometriosis was still spreading. I didn’t hurt him of course and he gave me the option to take a leg catheter home for three days or stay another night in the hospital. There was no way I was staying another night. Then he told me a little bit about what was found during the surgery. He said we would talk more at my six week follow up.

Recovering from Hysterectomy – Bladder Infections and Catheters

I left the hospital May 10th with a leg catheter and went back to the clinic three days later to have it removed. I tried and tried but could only get 50 cc of urine out so it was put back in and remained in for a total of 11 days. While I was there, I had them do an exam to see what was going on because I was in such pain. I thought I had a yeast infection. A urinalysis revealed I had two bacterial infections. Could that be because they kept removing and reinserting the catheter, I wonder.  I also know now that I have a latex allergy. I ended up with blisters all over my stomach from where they bandaged the strips to close the incisions.

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I have suffered from endometriosis for as long as I can remember. I am sharing my story so that others may learn from my experiences, and be encouraged to share their own. I live in Canada. I am happily married with one child. I like social networking, raising awareness for endometriosis, learning about health, hanging out with family and friends and being my daughter’s number one fan. Follow me on Twitter at: @endendoforever.

16 Comments

  1. Reading this in December of 2018. I am finding solace in reading other people’s stories. I am due for surgery for my stage 4 endo soon. I am scared about what the dr will tell me when I wake up. How are you doing now? It’s been 4 years since your last post.

  2. I had my hyst. in June 2013, it does get easier! I am not 100% symptom free but it is much easier than what I was living with before. diet and exercise help, which exercise before was merely turning on the heating pad 🙂 good luck!

  3. Thank you so much for disclosing your very painful battle. To this day there are far too many people who do not believe that endometriosis takes such a huge toll physically, mentally and emotionallly – and then add on that just as many think that a full hysterectomy/oopherectomy is no big deal and of course that it is s cure all for endo and why don’t we all just go do that? It does help in a lot of cases and I am glad it helped you, but of course it is not a simple decision or solution and I know you certainly don’t consider yourself “cured.” I am grateful for fellow patients who share their stories and give a voice to the millions who either cannot or feel that they cannot speak up for themselves. Even in 2014, it’s a gamble, and you are brave to do it, and I thank you.

  4. 2 years ago I had a hysterectomy because my endometriosis had gotten so bad & I have to say it was the best thing I’ve ever done. If only I had known the relief I would have had I would have done it years ago. I also had 2 very large fibroids removed

  5. Yes I was pregnant in 2004 have birth full term. During pregnancy I felt amazing and after pregnancy things got worse. However I have heard that people are the total opposite of me so I really don’t know if it would help everyone. It took 1.5 yrs to get pregnant as well.

  6. Endometriosis is an imbalance in prostaglandin metabolism. I suggest that you do research on your own to discover how this condition can be treated by an appropriate mixture of gamma linoleic (GLA) and eicosapentaenoic(EPA) acids.

  7. Does endo go into remission, when you are pregnant ? And is endo an auto immune disease. I have pocos and fibroids, my fibroids were inoperable, they were so large, I wanted children, so I would not get the hysterectomy. I was on Lupron, for four months, which I hated, but it did shrink the fibroids, still I had twenty lbs of tumors removed I had a wonderful doctor who would not give up. He saved my uterus, the tumors attached to my kidneys, and every where. I did have to have invetro, and had twins. But after my pregency, I was much better. I still have fibroids and pocos, but am not in pain. The reason I have this lengthy reply, is I am asking if Angela has ever been pregnant? And if the HCG hormone, which makes your body think it’s pregnant, would help the endo, and send it into remission. My cousin also had endo and was infertile, almost had a hysterectomy, and went through invetro, and miraculiosly, got pregnant, and her endo went into remission, and she had three more spontaneous pregencies, and now she is ok. I hope thing work out for Angela.

  8. I should be clear to many mentioning specialist. There are 6 in Toronto if I am not mistaken. Two are not accepting new patients, one is on indefinite sick leave and the other 3 are well versed but when it comes to complicated cases I wanted to stick to the surgeon who is a top excision specialist.

  9. I can’t remember that Drs. Name. Is it Dr Valos or something like that? If so he does not do excision he only does laser. Not saying he is bad but he is not known as a too specialist in canada

  10. I heard London has a new endometriosis specialist. I too have endometriosis with very bad pains. It has done a lot to my body as well. I have fibroids and ovarian cysts because of it. It is spreading into other body parts as well. It has affected my fertilities so for me to try get pregnant I have to do fertility treatment. This does not always work. I’m gonna attempt to try it if don’t succeed first two try I’ll be wanting hysterectomy. Doctors want to do a full one where they take my tubes and ovaries at same time. I had been on depro pervara for this past year and just got off of it few months ago. Depro did help me with the pain. It didn’t always help stop the flow but it did help the pain. I had the flow four times while I was on it. I can say I don’t miss having the time of the month. I know it’s not a cure and there is no cure for it but I found it did help reduce my pain a lot.

  11. Catherine you are right she is out there. I should have wrote one of the only my mistake. For me in Ontario it’s one of the only. There are a couple that do specialize but not great excision surgeons in canada.

    Christina was on leave for a bit also althought I heard she is back now. And yes I have heard great things about her.

  12. That doctor is not the only Endometriosis specialist in Canada. Dr. Christina Williams out of the BC Reproductive Women’s Health Centre in Vancouver BC is the best specialist out there. She teaches all over the world to educate doctors on this disease.

  13. Your story sounds just like me, except, I am yet to find that “angel” or the right surgeon to help. I have had a radical hysterectomy 3 years ago, and still suffer greatly from endometriosis along with Interstitial Cystitis. I have had IC for over 10+ years now, but it has flared up worse since the hysterectomy.
    Endometriosis is ruining my life, I would not wish this on my worst enemy. There needs to be something done to make doctors truly understand the magnitude of this illness.
    Thank you for your post, it gives me hope. And lets me find comfort knowing I am not alone. THANK YOU!!!

  14. I am really happy to hear that. I am 3 months today and I am having serious nerve issues not sure if it is related or apart of another problem I have going on. Good luck on the rest of your journey.

  15. I also had a hysterectomy in the fall of 2012. I had a real bad case of endometriosis, to were I had to have everything removed. Putting me in earth menopausal. But today I am feeling a lot better and back to being healthy. My doctor was amazing! My husband stood by me and loves me just as much.

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