Angela Kawakami

Endometriosis and Hysterectomy: Reality and Recovery

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A week later, I was so happy the day I was told the catheter would come out. My nurse saw me there and let me come in before any patients showed up. She hugged me. She knew how much she meant to me. Like I said before, she was my angel. As for the catheter, I knew that all my Endosisters and friends were chanting “Free the pee!” and I did, not a lot, but enough for me not to have to keep it in.

What the Surgery Revealed – The Endometriosis had Spread

After surgery, I was only told that my pelvic wall was removed, stents put in to free the ureters and I had recurring rectovaginal endometriosis. I was shocked to be honest, because I didn’t expect to have the endometriosis recur, let alone rectovaginal endo again. The previous doctors had denied the existence of my endometriosis for so long; I had come to believe them. Time ticked on and I was anticipating my follow up because I wanted to know if I had adenomyosis or not.

The surgeon came in and began to tell me further what he had done as well as gave me a copy of my surgery report.

There were multiple small fibroids, a cervical polyp (benign), rectovaginal endometriosis, right ureteosacral ligament nodule, deep infiltrating endometriosis of the sigmoid colon, deep bladder endometriosis and massive scar tissue on the right side. I had to have my pelvic lining removed, I assume because of the deep infiltrating endometriosis as well as the ureters that were embedded into the pelvic wall. When I asked him if it was because of the ureters, he said, yes. I also had an upper vaginectomy to remove the rectovaginal nodule. I had focal endometriosis in left fallopian tube, left ovary as well as the cervix. I had a modified radical hysterectomy but I am not quite sure what modified means unless it has to do with the vaginectomy that was done.

He had put stents in so that my ureters wouldn’t be damaged and that is most likely why I was bleeding blood for that long. Another cystoscopy was done to rule out IC (interstitial cystitis). He also did a enterolysis to make sure there wasn’t a bowel obstruction, as I have massive scar tissue that always sticks to my 3-inch laparotomy scar from when I had a bowel resection when I was seven years old.

In a way, I was happy because I knew it wasn’t all in my head, but it was not what I expected since I was told I only had superficial endometriosis a year prior by a surgeon whom he trained. What happens if I actually have aggressive endometriosis? Was the hysterectomy a mistake now? I am going to say no, because I definitely feel I have mental closure on this.  We’ll have to see how the physical symptoms of endometriosis change over time.

11 Week Post Hysterectomy – Bring on the Hormones

The first week after surgery, the hormone hot flashes were not too bad. I had a few, and to be honest, I expected them to be a lot worse. Over the next couple of weeks, the cold flashes began. These were not fun. Hot flashes I could handle, but no matter what I did I could not get warm, especially when they happened in the middle of the night.

After a month or so, both the hot flashes and the cold flashes died down to the point that I felt actually good. I now knew what was uterine pain and what was bowel pain too, so that made a huge difference for me.  Urination was still difficult, but I have been seeing a urologist for that, and hopefully, it will get better.  My bowels are better. I no longer have rectal pain, although I do still have some constipation.

Post hysterectomy, I noticed huge black bags under my eyes and new wrinkles. Maybe I just didn’t notice the wrinkles before because I was so run down but where did the bags come from? Wow. I did not expect those changes. Eyeliner and mascara help a lot. Also, something I did not expect, my nose is so dry that I have multiple sores in there. I have to keep lubricated and at times use hydrocortisone because it is so painful.

Sex….. Well, it still hurts. I am not sure if it still hurts because I am drier down there or that part of my vagina was removed because of the endometriosis. For now, sex is just not happening. I will wait a little longer to see if it just needs to heal some more.

Post Hysterectomy Mental Health

I have to say it was the mental health issues that really kicked me right down. Prior to having surgery, I was diagnosed with complex PTSD, generalized anxiety and major depression and so I was expecting some of what was going on now.  I had been on Prozac for three months prior to surgery.  I still do not know if it was menopause or the Prozac that sent me right over the edge but something did. Post hysterectomy, I began having vivid visions of slashing my wrist, and also cutting, but looking for places to hide the cuts so my husband and daughter couldn’t see. I went back to my general practitioner several times to tell her what was going on but she just wanted to keep upping the dosage of Prozac.

About three weeks ago, the vivid visions started to again. Only this time I could see myself opening a wine bottle and drinking right out of it. I was outside my daughter’s day camp, in the parking lot.  I could not sleep. I didn’t feel like it was the hormones, because even now I rarely get hot flashes. I was mentally breaking down and it was only getting worse by the day. In my mind, I know that I wouldn’t kill myself because I could never do that to my daughter, however, the thoughts were so intense I drove myself to the ER to be assessed. At this point, I was thinking I was bipolar because I was on a manic ride that showed no sign of stopping any time soon. I didn’t feel like anyone understood what I was saying and at times I was even stuttering my words trying as I tried explain. It was like my mind went blank.

Eight hours later, I was released with pamphlets, a script for Seroquel and an appointment to follow up with the psychiatrist. Right away the Seroquel helped and it was good because it didn’t give me the wine-like relaxed effect. I hoped it wasn’t as addictive like lorazapam. I started to gradually lower my Prozac to 20 mg then finally just came right off them because I really felt the problem was with the Prozac.

I have been off of the Prozac for one week. I am almost three months post op and I am starting to feel better. I am no longer having the visions of killing myself.  The psychiatric symptoms were frightening.  I hope that this never happens again. I think the symptoms were from the Prozac because when I came off of the medication, they disappeared.  I hope it wasn’t the hormones. I am not sure what I would do if those visions come back.

As far as my health and endo pain are concerned, it has been a slow recovery. I am still not sure whether this will stop the spread of endometriosis in my body, but I know this was the right decision for me. I am tired of the pain and suffering this disease has given me. I want it to be over.

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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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