I have always preferred natural processes. I had four natural births using Lamaze technique. I breastfed. I was a registered nurse. I knew my ob-gyn doctors for years. I never expected my life to take a sharp and unnecessary turn for the worse, but it did, after I had, what was an essentially unneeded hysterectomy with oophorectomy.
A Total Hysterectomy for a Benign Ovarian Cyst
In 1990, I was 39 years old. I was physically active, I worked out daily. My blood pressure always in the 110/70 range. I scheduled my annual exam for mid March. My cycles were regular. I never had a suspicious pap smear. A couple years previously, however, I noticed some pain on ovulation. I asked the doctor if I might have endometriosis. She said she couldn’t find any evidence on exam.
My appointment was a shock. She found a mass near my right ovary. I was scheduled for an ultrasound. The ultrasound showed a 4cm mass.
I returned to the doctor with my husband. She said the mass was likely benign, but it should be removed. She asked if we planned any more children, we said no. She then recommended that I should have a total hysterectomy and my ovaries would also be removed (TAH-BSO). Her reason was that I might have future masses. She said I was in great shape, that I shouldn’t have any weight problems. She would do a Pfannenstiel incision (bikini cut) and it would fade to a small light scar. I was shocked, my mother was going through chemotherapy for cancer. What if I had another mass later that would be cancerous!
We scheduled surgery in two weeks. She gave us the ACOG hysterectomy brochure. I talked to a couple of friends that had the surgery. Not much to it, just rest a lot after surgery. They seemed fine, and hoped I would too. I called my doctor with a few questions, how will I feel after surgery and how might it effect sex. She said the Premarin would keep me feeling just as my natural estrogen has done.
Now the date was closing in, and my doubts were rising. I was busy with my four children, age 9 to 17. I read the ACOG brochure, it seemed too simple. The day before surgery, I asked my husband if we could go to the bookstore to see if we are missing something. He felt we had ample information from the doctor and friends, and yes, the ACOG brochure. We were both nervous. My husband didn’t want to lose me should I not have surgery. I was nervous about my future. My gut feeling was not to do it, but my brain told me that I don’t want a worse situation, if I don’t have the surgery. It haunts me to this day, I had that last chance to learn the truth and I did not take it.
A Total Abdominal Hysterectomy and Bilateral Salpingo Oophorectomy
The surgery was scheduled for April 5, 1990 at 1pm. I was terrified. My husband was so scared, he barely spoke to me. When I woke up in the recovery room, I felt a large dressing on my abdomen. I told the nurse “I just want to go home.” The doctor came in Saturday morning. She told me she found a lot of endometriosis. She detailed how much of it she cleared out. She said I would never have to deal with it again.
I went home Monday, I felt pretty good. I had a lot of abdominal swelling, nut that night I got up to go to the bathroom. It was then when I broke down and cried. Two weeks later, I took a good look at my abdomen and saw the horrible swelling over the incision. I showed it to my husband and he reminded me that it should take about six weeks to heal. He was very quiet and distant since the surgery.
I went to the doctor and she was startled when she saw my abdomen. She said it should be better in the coming months.
Learning the Truth
I was frustrated, I went to a bookstore to search what happened. I thought it was a hysterectomy issue. I found Hysterectomy: Before and After by Winnifred Cutler. As I glanced through the pages, it was a sharp contrast to the ACOG (sales) brochure. This was the information I needed BEFORE surgery! I began to tear up, I bought the book and went home. I could not understand why the doctor and ACOG would not inform women of these after effects. Now my abdomen problem was the least of my problems.
I asked my husband to read the book. He did but maintained the doctor gave us all the information we needed. I felt betrayed by everyone I had believed and trusted. No one had been honest with me. At that point, I was prescribed Prozac.
My post-op appointment was tense. I told the doctor that I had numbness in my right thigh, no response. I had insomnia, breast pain from the high dose of Premarin. There was no improvement with my abdomen. She told me “Just don’t look in the mirror”. By that time, my husband knew just how these doctors work. He had no doubt that the surgery was not necessary.
In March 1991, I went to another state and had a mini-abdominoplasty for scar revision. When the cosmetic surgeon saw the scar he said “That incision was closed unevenly!”. The three cosmetic surgeons in my area never hinted that my gynecologist was at fault. So, after my surgery I submitted my records from him with before and after photos. Anthem reimbursed me for the abdominoplasty.
I felt better about my appearance, but the after effects of hysterectomy and ovary loss were beginning to pile up. I could not have the internal orgasms I had before. Still had insomnia, thigh numbness, and problems with Premarin. I wasn’t myself, I had anger and rage. I was tired, physically exhausted.
I was on Zoloft for a year and gained nearly 60 pounds. I finally ‘quit’ doctors. In 2001, I became a vegetarian. I lost most of my weight, but I still am 30 pounds over my ‘intact’ weight. I eventually could not wear contact lenses due to eye dryness. I still have episodes of rage and anger, panic attacks and on going depression. I have low libido, and few slight orgasms, along with bad back pain, knee pain, sciatica, and hip and joint pain.
I was 5’4 and now measure 5’2. I can only get one finger (normal is 2 to 3 fingers) between my ribs and pelvic bones due to post hysterectomy skeletal changes. In February 2017, I was diagnosed with bladder cancer. Fortunately, it was low grade and manageable. It bothers me to ‘need a doctor’. There are studies linking hysterectomy and ovary removal to both bladder cancer and renal cell carcinoma.
Where I Am Now
I am now 67. I still grieve my organ loss and the negative impact on my life. I am trapped in a body that is not mine. I recently looked at a picture of me at one year old. I wondered if that little girl would have known her life and happiness would end in 38 years.
- I could have gone to a bookstore to research the surgery the same day I scheduled it.
- I would have had a second, third or fourth opinion.
- I should have listened to my gut instinct.
Research, research and research. You can’t undo the damage! Don’t let the opinions of others cost you your well-being. You are the one that has to live with the consequences! They do not!
Share Your Hysterectomy Story
If you have a hysterectomy story, publish it here on Hormones Matter. Every story counts. Send us a note for more details.
We Need Your Help
More people than ever are reading Hormones Matter, a testament to the need for independent voices in health and medicine. We are not funded and accept limited advertising. Unlike many health sites, we don’t force you to purchase a subscription. We believe health information should be open to all. If you read Hormones Matter, like it, please help support it. Contribute now.
Yes, I would like to support Hormones Matter.
Image by 412designs from Pixabay.
This story was published originally on May 16, 2018.
Run for your life when a doctor mentions hysterectomy. By the way, it takes them about 1 hour to perform and they get paid $10,000. It is always recommended in the South to get a hysterectomy. Run for your life.
I want to thank this site and yet also cry for the ladies butchered unnecessarily.
Large ovarian cyst, and was due to get a cystectomy but lockdown happened and that was cancelled. I had read this site before and would have only agreed if I kept both ovaries regardless of other issues, including cancer, which I was told I could have. See, I am a quality of life over quantity of life woman, and all these issues I have read here, I already have anyway. In no way do I want them to become even worse.
I still have a large cyst, but I have managed it. Sure it affects my walking and I have to be careful doing odd jobs. Its been close to torsion ….some would say I was mad. I have even had the ignorant be suspicious of my decision and kinda bully me for it.
But its not their life, its mine. And you cannot put a price on sexuality which goes beyond the mechanical act itself. Its sensuality of that loved up feeling AND of life itself in even the little things, and being a part of it in spirit not just in body.
I have gone through sexual abuse, I do not want to go through it again via medical rape. Thats what it is, a form of sexual abuse. All mutilation is (ask men and women about genital mutilation/circumcision)
So….how have I lasted years with this condition that supposedly needed righting right away?….
My cyst was 10cm but I got it down to 8cm using supplements (progesterone cream, DIM supplement, Sulforaphane, Calcium D-Glucarate) after ready a study on cyst shrinkage using progesterone and estrogen blockers.
My cyst may have ruptured as cant feel main bulge and ca125 shot up from 86 last year to 493 just last month, but I still have that pain in pelvic area. In the worst case scenario the cyst fluid had CA cells or its a tumour, I will MEGA DOSE vit C, like I did last time there was shading and I cleared the shading. I got upto 35gram of vit c powder. If this is you google mega dose vitc protocol and theres a site with a tolerance loading test and instructions from then on.
They use the C word as a spell. I have broken their spell. The worst part of it is dealing with the drs and the ignorant. A neighbor has a cyst like mine and is going for the lot out. I know she wont listen to me as the fear of cancer is too much for her to bear. But now I am getting the undercurrents of disapproval for not following suit when I clearly have issues.
I think you ladies, and the gents of you ladies, will understand why I do not want to. This is my choice and many wont get it, but I am doing what I feel is right for me whole-listically.
I used to work in surgery and no-one wanted to find out why we get these issues in the first place. They dont tell you cysts can come back or of they do, they downplay it like coming back for surgery is like coming back to have bloods taken.
I truly believe in my case thyroid issues untreated and mistreated for so long set this off, along with hormone imbalances. I can no longer get T3 from abroad so making do with self treating that best I can with supps.
Patients=Profits and thats the bottom line.
God bless you all, God is both Father and Mother and how does God weep at this evil
I found you in time. I have ovarian cysts and uterine fibroids, I’m getting referred to a ob/gym for treatment and have been thinking about a hysterectomy after 2 failed ablations and continued erratic periods.
After just 12 hours of research I will NOT be asking or allowing a hysterectomy.
with a history of cervical cancer, I think conservative treatment, fibroid/cyst removal and at most, another ablation, for the uterine wall to hopefully end my nuisance period after 45 years, 3 kids and 15 years of tubes being tied.
I’m active and have a very physical job. I’ve been very fatigued the last few years and wanted to go in HRT for perimenopause. My family doctor insisted on ultrasounds before we did which is how we found the cysts and fibroid. My left ovary is 3x the size of the right.
Any advice- please tell me!
Gwen, you made a choice to not have a hysterectomy.
I hope you can find the problem with the ovary and the fibroid.
Excellent choice for not going through with the hysterectomy. My advice, do not do anymore ablation surgeries, instead opt for excision. Ablation is burning with a laser. Most OB-GYN’s do not have ablation surgery experience. When having excision surgery for endo, the new OB-GYN said the old OB-GYN’s ablation surgery made the endo worse. Either way, do your research for an experienced excision “GYN” surgeon, # of excision surgeries per year & success rate.
I went in for a scope, d&c and ablation for newly irregular periods. No cysts, no endometriosis, no irregular paps… no history…
Woke up to his gloves snapping saying he left me my ovaries. Full abdominal hysterectomy, scar twice the size of my csection scars… lingering post op issues still being figured out… I am DEVASTATED!!
I have stage 4 endometriosis that was supposed to be cured by the complete hysterectomy and bladder dissection that took nearly 7 hours. Three years prior I had given birth to my 7th child via emergency c section/ inverted T section ( all previous births were all natural using no drugs or interventions) because she was in a sideways lay after having been breach. The Ob/Gyn didn’t use an anti adhesion panel which they said caused the problem with the bladder and intestines.
I woke up from surgery hurting all over and learned that they had dropped me, thus the deep purple bruising on hip and a torn labrum. 5 Am the morning after surgery, a student doctor came in, literally ripped the dressing off my belly and along with it went all the skin that was covered by the tape. Now by belly was all raw and angry. I was peeing blood for a week
I was told that HRT was not an option post surgery. I was hoping for something that would help me feel like me once again. No help was offered, I was told to just pull myself up by my bootstraps by my female ob/ Gyn who quit practicing less than a month after the surgery and went back to school to become a doctor who specializes in in utero surgery.
I used to be so strong and was thin all if my life until the surgery. I gained 65 pounds since, the migraines are finally managed with monthly shots, my thyroid has gone nuts flipping between hyper and hypo, chronic pain is kept at dull roar
75% of the time. I cry, a lot. I am angry and mourning and nobody cares.
If I could go back and do it all over again, I would have only agreed to the bladder dissection ( but they did t know how bad it was until the opened me up) and massive excision surgery.
Yes, the endo pain was worse before the surgery, but the CDC complete hysterectomy was not necessary. I has no idea that the pain I had suffered with all the ye ar is except when pregnant or nursing exclusively was endometriosis. For pain I could barely breathe through the first do you tor prescribed antidepressants. Mind you he was the dr. Who did the c section ( inverted T section) and didn’t use anti adhesion panels.
I hope that by writing this it may save somebody from a life where you have to find a new normal without your old self.
Thank you for your post. I am so sorry for the pain you have endured. I still mourn the loss of myself.
I remember crying in the preop area not wanting this surgery, even though at the time it was only “cyst removal with the possibility of a hysterectomy”. I totally abandoned my inner voice just because I was ill advised and tired from working and saw this as a few weeks off….I wouldn’t wish this hormone fall out on my WORST enemy.
WS, thank you! Sorry you have a similar story. The article link below has some info connecting bladder cancer. Yes, the higher risk is renal cell carcinoma.
Some time ago, I found more on both in a bladder cancer website. Similar to this. It appears any urinary tract cancer may have a link to hysterectomy and oophorectomy.
I’m sorry you were scammed into an unwarranted hysterectomy and castration. I was for the same reason, a benign ovarian cyst. I too wish I had listened to my inner voice. But I dismissed it since I’d known and trusted my gynecologist for 20 years. Here he was a wolf in sheep’s clothing. I have also shared my story (and other articles) here on Hormones Matter. Thanks for sharing yours.
I’m sorry you were diagnosed with bladder cancer. 🙁 I would be interested in seeing the study on the link between bladder cancer and hysterectomy if you have that. I’m aware of the studies showing a link to renal cell cancer.