My Endometriosis Nightmare and how I almost died from it!

Symptoms: Heavy and very painful menstrual cycles along with painful bowl movements a week to two weeks after cycle (symptoms increasingly worsened lasting longer and longer)

Onset: For at least the past several years moderate – Worsened around April 2014, sought medical attention for pain.

Summary: April 2014 - Saw family doctor I informed him that I googled my symptoms and they fit Endometriosis. After examining me and listening to my symptoms he concluded that Endometriosis was likely. He informed me that I needed to have some tests to determine. I had a CT scan and MRI performed which revealed approx. a 3 cm mass that was pushing/stuck to my colon wall. He could not determine origin of mass with MRI, so he sent me for a colonoscopy which came back perfect with no polyps and no mass on inside of colon. I was then referred to my gynecologist for further medical attention. After discussing it with Dr. XXXXXX he performed a laparoscopic procedure to determine diagnosis which is the only true way to diagnose Endometriosis. After procedure Dr. XXXXX confirmed the mass and Endometriosis and referred me to a specialist to remove my uterus and ovaries along with the mass. I was referred to Dr. XXXXX (gynecologist cancer specialist and general surgeon). Dr. XXXXXX scheduled surgery on my first appointment with him. He looked at the tests and results so far and informed me that I need surgery and the risks are I could hemorrhage, or die and that he may have to open me up and I could temporarily have a colostomy bag. He would be using the DaVinci Robot for the entire procedure including removing the mass. The surgery was scheduled for June 24th. I was given a bowl prep and I preformed all bowl prep instructions exactly has instructed. The surgery was approx. 7 hours long. They removed 8 cm of colon and burned off numerous lesions of endometriosis along with removing my uterus and ovaries. I was taken to recovery and everything seemed to be ok. I was released to go home approx. 5 days later. I went in for my post op appointment on July 10th. Dr. XXXXXX did a pelvic exam and said I was healing nicely. I did inform him of a lot of discomfort I was having in my right buttocks and down my right leg (I had informed him in the hospital after the surgery that the right side of my vagina and butt was numb…he said that it should go back to normal that it was a long and complicated surgery). Dr. XXXXXX never not one time did any tests on my leg or even acknowledged it was a problem or a symptom of a problem. A couple of days later I was at home sitting in bed and felt a gush of wetness in-between my legs. I pulled back the covers and saw bright red blood. I got up and went to the bathroom. By now my pants were around my knees, weighed down by blood. I sat on the toilet and the blood just continued to pour in the toilet. I started to get dizzy and passed out landing on the bathroom floor and I hit my head as well. My 15 yr. old niece who was staying with me to help after the surgery called 911. I was rushed to the hospital and Dr. XXXXXX met us there. The bleeding had pretty much stopped at that point. He then packed my vagina with gauze and put in a catheter and had me admitted. I was then given two pints of blood later that night. A CT scan was performed to try to discover why I was bleeding. The CT scan discovered an abscess that was still intact. Dr. XXXXX admitted that it was not what caused the bleeding and that we still did not know why I had hemorrhaged. Dr. XXXXXX had a drain put in thru my right buttocks to drain the abscess. No further tests were performed even when I asked for them to determine why I bled in the first place. Approx. 5 days later the nurse was flushing the drain and I had a gush of blood and saline come out of my vagina, I informed the nurse of this and it was shrugged off like it was no big deal. My drain was flushed at least two to three times more with the same result and I informed the nursing staff each time it happened and received the same response each time that it was ok. Then during one of the flushing’s I started to hemorrhage again. The nurse “Jenny” was cleaning up the blood….she had me get out of bed while bleeding and had me sit on the couch then she changed my sheets and had me get back in bed and then continued to clean the couch and floor all while I am bleeding. I then told her I was going to throw up and I vomited on the floor by her feet. She then looked at me and said this is not normal and called for another nurse. At that point I am getting very faint and then next thing I know tons of nurses are in my room giving me fluids and doing things to help me. They take me down stairs to ICU (I think) the bleeding from my vagina stopped mostly and then I told the nurse I felt like I had diarrhea she and another nurse started to clean me but did not seem concerned. I kept telling them I felt like I had diarrhea and they just kept cleaning me and never mentioned it was actually blood. Then during one of the times they were cleaning me they got very quiet I was then told that it was not stool it was blood. My great aunt and cousin were also in the room during this time. The nurses taped a bag on my butt to catch the blood. Dr. XXXXX was not on call so another doctor I had never seen before from his office that was on call, poked her head in and out from time to time but really did nothing. I was told that I coded out due to blood loss and was revived. Finally Dr. XXXXXX showed up and rushed me to emergency surgery to see why I keep hemorrhaging he discovered that I had blood vessels in my abdominal cavity that was bleeding and the abscess had corroded my colon. He then had to remove more colon and give me a colostomy along with a large open wound from my belly button to my pelvic bone due to cauterizing the bleeding blood vessels. This wound had to heal wide open with a wound vac and then packing it with gauze due to how swollen my body was at the time of surgery and the doctor was afraid of the wound busting open at the incision if I swelled more. I was given 10 to 12 pints of blood during surgery. I remember waking up with an incubator tube down my wind pipe and my arms tied down to the bed. Dr. XXXXXX said that he believes that when he cut into my colon on the June 24th surgery bile spilled out corroding the blood vessels and colon.

After the fact: I am left with a huge abdominal scar that is caved in the entire distance of scar (indented), Nerve damage of some kind to back of my entire right leg, including right side of vagina ending in my calf. I have a colostomy bag for the next 6 months then have to undergo another complicated surgery to have it reversed and we do not know if it is even possible and if so the doctor may have to build a permanent bag on the inside.

My thoughts: I feel like there is negligence here some place. I should not have had to hemorrhage twice and die before the doctor realized he made a mistake during the first surgery. Why did I sit in the hospital almost 5 days till I bled again without any tests to figure out why it happened in the first place? Should the DaVinci Robot (primarily used for hysterectomies) had been used to cut into my colon? Should a GI specialist been present during the surgery? Why did I have to suffer so much??

[Impatient]

It's a dreadful experience you have been through and one you need to discuss with a medical professional. There are no endo doctors or nurses on this forum -just patients and suspected endo cases. Forum members are all volunteers.

In your case because it does sound like their may be a possibility of litigation regarding the 2nd op, I would recommend you seek out a 2nd opinion from an endo expert colorectal surgeon and solicit copies of all your medical notes and scans to copy so the 2nd expert can take a look.

Having said that- all surgery carries risks, bowel surgery is particularly high risk surgery, and things can and do go wrong from time to time and it isn't always the surgeons negligence that causes that, nor can it always be predicted when things are more likely to go wrong.

In the UK (this is a British Endo forum) we have a system whereby the staff nurse at pre-op is obliged to run through the main surgical risks, and these are again covered on the day of surgery before you sign a consent form to have surgery.

In my case it was a lap op - to remove cysts, i woke up to having had a laparotomy, and a catheter then had 17 months of recovery where my bladder wouldn't work for itself.

It wasn't specifically pointed out how the bladder might be affected, just that surgery can sometimes impact the bladder and bowel. I was unlucky, and so were you too.

And someone has to be the 1 on 50 cases where something minor goes wrong or 1 in 500 where there is a major complication. It sure is rotten luck if it happens to you and you pulled the short straw. As for robot surgery with Di Vinci - it is increasingly used in many countries for pelvic surgery with better success rates than more antiquated methods so I don't think you can blame the robot. But perhaps there should be some questions as to why this op was not done via a laparotomy incision in the 1st place. That's a question you could put to the medic carrying out a review of your case notes.

There will be other gynae-oncology and colorectal-oncology surgeons around who will be in a better position to review your case notes and give their assessment of your op, and the subsequent complications.

I don't know whether you want to do that first, or go a seek the counsel of a medical negligence lawyer first and discuss it with them as they may be willing to pay for a 2nd opinion out of a claim you may be making.

But it might also be worth waiting till you know the outcome of the reversal of the colostomy, as clearly that would be an issue too in your long term prognosis.

My laparotomy scar is indented too - it was a bikini line cut and is quite tight and still numb a bit either side of the scar where the nerves were cut - so that sounds normal to me, it is very early days yet in terms of determining what the permanent legacy of this op will be for you.

I wasn't op wounds pain free for close to 5 months, the bladder took 17 months to start working for itself, and during the healing time things I thought I'd be stuck with forever have resolved themselves for the most part. I was only expecting to have the lap and be up and about in a fortnight. Never in my wildest imagination did I even consider that it would be such a big op or take so darned long to recover from. I saw the statistics on the NHS form and as we all do, thought it wouldn't apply to me. And you probably thought much the same too.

Wish you a lot better luck with your recovery and the reversal op when the time comes, than you experienced in op 2 and perhaps the numbness in the legs - which is caused by the sciatic nerve may resolve itself too when the colostomy is reversed. We can all but hope that turns out to be the case for you. Certainly numbness can recover over time, to some extent.

My tummy wound was numb to a few inches either side of it after the op, and it has considerably reduced in area in the 3 years since then. The dent in the skin is still there though the scar itself can hardly be seen at all now.

And having gone through all of that - I am for the most part endo pain free, so it was worth it in the end, although nothing prepared me for how tough the recovery experience would be and my complications weren't nearly so scarey as yours were.

On the bright side - yes there is a bright side.... mercifully there were very good medics in attendance that did manage to save you once they realised things had not gone to plan inside and you have a lot to be grateful for to the many wonderful volunteer blood donors who gave up their time to make a donation. Without them too, you wouldn't be here.

We do have to remember to count our many little blessings, even though being overwhelmed by the physical and emotional shock of things going wrong is at the forefront of thoughts.

Hope your recovery continues to go to plan with gradual improvements happening all the time.

[Brownlow]

Hi tgriffith30,

I'm so sorry to hear about all you have been through. Sending you big hugs.

In answer to one of your questions, I believe a GI/colorectal surgeon should have been involved in your operation. As far as I am aware, a gynaecologist should not be resecting bowels. Not their department. But maybe someone with more knowledge on this can advise.

Ideally you should have been referred to an endo specialist. They always have a colorectal surgeon and a urological surgeon on their team should they be required. Was your surgeon an endo specialist? Did you ask if a colorectal surgeon was involved?

It seems remarkable to me that the reason for your bleeding was not examined. Does it not seem obvious that if you've had a hysterectomy and blood is coming out that you were bleeding internally? People don't just bleed for no reason.

The record you have written is very good. I suggest that you write it out in diary format in as much detail as possible. It's remarkable how things can sometimes become a bit blurred with the passage of time and you may need this record in future.

Personally I would not want to go near that surgeon again. While your issue now is mainly colorectal, maybe your first port of call should be an endo centre especially since they have colorectal surgeons. Maybe ask your GP for referral to one of the colorectal surgeons attached to one of these centres. Find one here. bsge.org.uk/ec-BSGE-accredi...

And for what it's worth, I do feel this was quite negligent. The original issue might lie with the robot nicking a blood vessel but your horrific symptoms that followed were not investigated properly. Here's a good article on problems with robotic surgery. dailymail.co.uk/health/arti...

I do hope that you are recovering well from this terrible ordeal. Stay strong and be good to yourself. xxx

[Impatient in reply to Brownlow]

Brownlow - she sounds like she's in the USA not the UK - so our system doesn't apply to her. (I am judging by her choice of spellings and that she quoted calling 911 - when our emergency number is 999)

I am not even sure if they have the concept of endo centres in the USA as we now do here in Blighty. They have endo specialist gynaecologists - and gynae oncologists will have a higher degree of surgical training and expertise than regular ones.

But it certainly is a case that needs reviewing by specialists, and as tgriffith has probably had to pay for this - or gone through private medical insurance it would certainly be something the insurance company would be interested in, if it means a negligence suit cuts their considerable extra costs.

Also forget to say a very well done to your niece - she's only 15 it must have been a ghastly shock for her to deal with too. I wouldn't want her to be terrified that this is a regular thing with surgery, it is quite exceptional and rare to have a major issue after a surgery like this has been. She sounds like a level headed young lady to have dealt with this and got you the help you needed.

[Brownlow in reply to Impatient]

Good point Impatient. Too early in the day for my brain to function fully. A bit of a rarity these days!

I second that, well done to your niece tgriffith.

[Blondedia]

Disgusting......this is a gross example of neglect and you are lucky to be alive!! It's shameful that you we're treated this way. Dr xxxxxxxx needs to have his medical licence re-examined. Surely you are owed compensation for the way you we're treated.

I hope that all is well now.

Xxxx

[Hidden in reply to Blondedia]

Thank you. I do not feel like anything was purposely done, but yes I do feel like things were handling very badly and caused me to suffer cause of it, if the doctor would have done what I kept asking and did more tests like MRI with imaging or something after the first hemorraging he may have seen the blood building up in my abdominal cavity and done the emergency surgery while I still had strength in me and maybe I would not have almost bled to death for a second time before he finally took it serious. Thank you for your comments. I am doing better but still get tired super fast. Only 39 years old and I have the energy of a 80 year old. Hopefully it will get better soon. Take care

[cupcakegirl]

Complications from surgery do happen, unfortunately - and whether he made a negligent error or whether it's "one of those things" is hard to know.

However, not investigating the cause of your severe bleeding for several days which led to you arresting, is most definitely negligent. Personally I would speak to a lawyer, and find out whether there are any time knits on filing this kind of claim, but I wouldn't pursue matters until you know whether the colostomy can be reversed or not.

I am so sorry for what you've been through - I hope you have a smoother ride from here on in, and can get some justice for what's happened to you x

[Neno-Mero]

How are you now? I wish you have recovered and do not suffer any more