Wednesday, 2 July 2014

PTLS - POST TUBAL LIGATION SYNDROME


My Personal Post Tubal Ligation Syndrome Story


By Margaret Elizabeth Jacob

On the 30th January 2013 I gave birth to my fourth child at age 34 years.
It was normal short labour and delivery.
The next day I had a post-partum tubal ligation -
This was when my life changed forever....

The Surgery:

I was told that this would be a 'very simple' procedure. When I woke up in the recovery room I was in terrible pain and had searing cramps tearing through my abdomen. Once out of recovery and back up in my room it seemed that every turn I made on the bed would result in pain shooting through all of my abdominal tissues and muscles. When I lay still the horrendous cramps would come. I could not get off the bed initially and I had to use a bed pan which involved agonizing movements. When I did eventually manage to get off the bed which was sheer hell I could not walk normally, I could hardly put one foot in front of the other. I started leaking urine which I had no problems with straight after the birth. It was a very long night that evening and I did not sleep at all. It was very difficult to look after myself let alone a newborn.

The next day I discovered that if I kept standing, I didn't have to make movements to get on and off the bed in order to look after my baby. It was less painful to sit on the visitors armchair to feed her. I was standing when the Dr came in. He said something about the operation being a success and he said "Oh good you are up already, you can go home tomorrow". I was not asked if I wanted to go home or if I was in any pain. I could barely speak or move. I couldn't make any bowel movements. It did not feel that this operation had been a success AT ALL.

The next day came and I hobbled out of the hospital at a snail's pace to the car. It was difficult to make the movements to get in to the car. I could barely get out of the car when I arrived home. I could hardly make it up the stairs. My bed was too low to get on and off.

I expected that the pain would start to ease off but it didn't. It continued like this for a 2 full weeks. I started snoozing on the sofa so I didn't have to get on and off the bed. I could not sleep due to pain and I felt exhausted. When I finally made a bowel movement it felt like my insides were being torn out. Using the toilet was the worst thing ever. Just to get on was bad enough and my bowel movements triggered the abdominal cramps and  bowel pains.I could not go out at all with new baby in the pram or go to school. I could not see any visitors or visit people.

Things only began to become more difficult. I noticed that I was not able to produce enough breastmilk and the quality of it was bad.  After 2 weeks I had no choice but to begin supplementing with formula milk.

I lost every piece on joy you should get from a newborn to that surgery!

Why had I been in so much pain? I began to wonder what the doctor had done. This couldn't possibly be normal.

Recovery:

The pain did eventually subside but somehow I just did not feel like myself ever again. I had a flu like feeling hanging over me. I was still breastfeeding but I got my periods straight away which is unusual. They were normal to begin with and came regularly in the first six months that I continued to breastfeed. It is not normal to have instant and regular periods while breastfeeding. I noticed that I started to have dizzy spells but I just put this down to the tiredness of having a baby. I felt quite gloomy but thought nothing of it and put it down to "baby blues". In this time I tried to resume a sex life. I discovered that I had very limited feelings in my genitals and that penetration resulted in deep pain coming from my left fallopian tube. I put this down to having the surgery and I thought this would go away once healing had taken place........ It never did...

Things were about to get much worse......

When PTLS Struck

I stopped breastfeeding when my baby was 6 months old because my milk dried up. This was when Post Tubal Ligation Syndrome hit me full force. Mother nature had been protecting me from it while I was still feeding a baby.

The first thing that I started to experience were constant daily headaches. My appetite disappeared and I began to feel nauseous after eating very little food. I missed my period. From July/August my cycle changed from 28 to 51 days. I had not EVER missed a period before, except when I was pregnant. When my period did finally arrive it started with a sharp pain under my left rib which radiated down the left side of my body. I then felt like I had been hit in the centre of my stomach with a football. Pain radiated down my thighs and legs. The bleeding was very heavy and flooding. It lasted for 7 days, I have always been bang on 5. At the end of the period the uterine cramps continued for another three days in my back. I still had no idea at this point what was going on and I put this down to 'stopping breastfeeding' and decided things would be back to normal next month.... 
Boy was I wrong...........

I did not feel close to well again. I started to have hot flushes, night sweats, bouts of rapid heart beat and digestive issues. I began sweating excessively and my body odour became very strong. I started to get a feeling that things were dying in my pelvis. My back ached constantly and I felt very tired with the pain.

In September I went on holiday for my anniversary which I should have been excited about but I was feeling so unwell that it was a dread. While on holiday I began to have these intense feelings of doom and I began to worry that this constant 'flu' feeling I had was an indication of some kind of serious illness. It was difficult still to eat without feeling nauseous. I tried to enjoy it for my family, thinking it would be the last if I had some kind of disease.

Seeking Medical Help:

I first went to see my GP, I described my symptoms and he examined me. He thought that I could be having thyroid issues and possibly heart problems because he said my heart beat was rapid. I proceeded to tell him that I had undergone a tubal ligation in January and I asked him if that could be causing the problems because they felt hormonal. The first thing he said was "Why did you do that?" in a shocked voice. He said No, he didn't think so, but to go and see my gynaecologist. If he didn't think so why did he tell me to see my gynaecologist? He ran some blood tests, including basic hormone tests and a full thyroid panel.
I called my GP 1 week later and the receptionist told me my blood tests were "normal". I was deficient in Vitamin D and prescribed with Vitamin D therapy. SO WHAT WAS WRONG WITH ME?

I called my gynaecologists reception and was given an appointment a few weeks away.

My Thoughts

I began to suspect that I was having some kind of tubal ligation complication. I typed my symptoms on the internet and up popped POST TUBAL LIGATION SYNDROME. Surely I couldn't have that? Wow... I discovered that some women even had ovarian failure after tubal ligation. I had not been aware of ANY of these risks. I also discovered that tubal ligation has long term physical effects on women, such as heart disease, thyroid issues and osteoporosis. Some women were finding symptomatic relief of PTLS from Tubal Reversal. That is tubal reversal for the relief of Post Tubal Ligation Syndrome symptoms (not pregnancy).

Would My Gynaecologist really have betrayed me like this?
I was about to find out..........


The Gynaecologist AKA Dr Doom

I decided to call back my gynaecologists receptionist and ask for copies of my operation notes, should I need to have a Tubal Reversal. I had to call back twice more until I could speak to the Dr. I asked him for a brief description of what he had done on the telephone and it sounded fine, cut and tie, although this time he mentioned he had taken out a piece of the 'distal' tube. It was the first time this had ever been mentioned. The description he gave sounded reversible, afterall it was a post-partum operation and usually these are the most reversible. He said I would get my notes when I came for my appoinment.

A couple of days later a pathology report arrived from him in the post. I checked it over - 1cm removed from the right, 1.5 cm from the left. The piece removed was described as "ampulla tubaris" - I looked that up and the ampulla is the mid-section to second half of the tube (until you reach the infundibulum which is the tubal opening). It all sounded good in terms of reversal (although I still hoped I wouldn't need one).

I noticed an email address on the envelope. I decided to email and ask for an urgent appointment. I feared that I could be experiencing ovarian failure or menopause. The receptionist called and made a new appointment for the next day. I printed off all the information i had found on the internet about Post Tubal Ligation Syndrome to bring with me to the appointment.

I just wanted help......

THE APPOINTMENT:
At the appoinment I explained my symptoms with no response. I also explained to him that I was having sexual problems and pain but no response. I tried to ask questions about the surgery and he told me that he just used sutures and cut through the tube, it was just routine surgery and to "hurry up" etc for my examination.
During a pelvic ultrasound I was told that I had not ovulated and I would therefore not get my period that month. After the examination he told me that I was having psychological problems!
I said no I'm not and I produced the information I had printed off on Post Tubal Ligation Syndrome. "Do not believe anything you read on the internet and TRUST IN ME".

He handed me a prescription for blood tests.
I did not trust him...
He would not take the print outs from my hand and told me to leave it with his receptionist when I left. He had known about PTLS the whole time and had not warned me about it!
I had been betrayed in the worst way possible....
I told him "I want a reversal". He said "this operation is not reversible", then he got up and walked out of the consultation. He did not give me my operative notes.

I went to the reception, paid my hefty bill which he had time to leave on his way out the door and left a note for him saying - I want my operative notes. I did not leave the PTLS print outs.

I had not been treated with any dignity or respect. I was effectively blamed for my own problems.

BACK HOME:
I went home and told my husband - his response "How the hell can you psychologically stop yourself ovultaing?????" EXACTLY.

A phone call followed at lunchtime. Dr Doom was suddenly very nice on the phone. He had received some blood tests from my GP and he now decided he just wanted me to take one test on the prescription which was an AMH test. I told him that I regretted having this operation. He asked me why and I said because of the effect it was having on my health. He was very nice and told me that all of my problems were caused by "psychological stress". He attempted to convince me of this in a very manipulating manner. He told me that the final test would "prove" that there was nothing wrong with me.

What Next

Later that day I received an operative report by e-mail. I did not fully understand the medical terminology. I couldn't understand why the operation was irreversible so I began to ask questions. Hey but I wasn't asking the right questions. I was asking about burning, was this the total amount of tube removed? The only type of irreversible TL operation I could find on the internet was a type called Fimbriectomy. After several emails I finally asked the correct question Did You Remove the Fimbria (tubal opening)? I was expecting the reply to be no (I thought I was just being paranoid because this was NOT indicated on the pathology report and I had NOT consented to that). The reply was YES, the fimbria are part of the "ampulla tubaris" and have been removed as well. Evidently, in anatomical terms, the fimbria is not part of the ampulla tubaris.



I received a very nice phone call from Dr Doom to say he had received my AMH test results. He said he had called the lab especially for me. He said it was just 0.1 above normal, that the result was 7.1, I wrote it down on a piece of paper. Normal for what I did not know. He conceded that I had a hormone imbalance and that I was producing too many male hormones. I asked about treatment. I was told it was too early for treatment and to come back in 2 months for further testing.

I asked him again about the surgery and he said it was perfectly normal. It was NOT normal!

I had ordered a copy of the results directly from the lab and they arrived that afternoon. It showed that my ovaries were now POLYCYSTIC and the result was higher than he said.



YES... he lied about the results and effectively denied me treatment.

Excuses

I asked the gynacologist more questions by e-mail about why the fimbria were not indicated on the pathology report and why the piece of tube removed was incorrectly described? He pretended that it was all a big mistake. He made an error, he thought the piece of tube he removed was called 'ampulla tabaris' and since checking a medical atlas he learned it to be something else. He even had the pathology report amended by the pathologist and an annex was added on to say the ends were fimbriated. In my opinion he wanted it to look like he had performed a mid-tubal. He did not ever expect me to find out. He only came clean because he knew I wanted a reversal.

My life after this

My cycle this time was 41 days. I had my period for 17 days. The pain once again started under my rib and I had upper abdominal cramping. The bleeding was heavy and flooding. My back ache was terrible and lasted days after the period finished. This was the worst time ever - AND I HAD NO-ONE TO TURN TO.

In November I consulted with another gynaecologist regarding Tubal Reversal. Due to the surgery that Dr Doom had performed on me he could only offer me a 10% chance of success. It should have been 70% if Dr Doom had cut through the middle of the tube like he should have done.

Meantime I started sprouting male hair on my chin and belly. My breast mass decreased and I was left with just saggy skin. I felt like I was turning into a boy in puberty. I started to have aggressive mood swings and sometimes I would just cry for no reason. My hormones were everywhere! The hair on my head became brittle, dry and started to fall out. My skin became dull and dry. My nails would crack and break. The excessive sweating continued and the body odour started to smell male. I rarely left the house and life was terrible.

When my period was due in November I started to 'spot' but nothing came of it. By the end of November I started to have these horrible pelvic stabbing pains in my left side. They were so sharp that it would stop me dead in my tracks. My back ached constantly. Sex was pain, not just during now but for days after. It was utter hell. It became difficult to communicate my feelings. I was stuck in a dead sea of sorrow. The sharp pains didn't stop until I had my next period (again a 51 day cycle this time with 10 days of bleeding).

To keep myself going mentally I started to find out more information about Fimbriectomy. Here's what I found out:

The Effects and Complications of Fimbriectomy




-   HYDROSALPINX (A Very Common Occurence   after Fimbriectomy) - the fluid builds up in the tube because the end is blocked off. With mid-tubals the fluid flows freely into the abdomen. This fluid leads to the tube becoming swollen/extremely dilated, this leads to tosion (twisting) and results in pelvic pain.
- INFECTIONS - Hydrosalpinx often leads to a build up of toxins in the tube which can cause nasty infections, such as salpingitis. In rare cases the tube can burst leading to even death. Also linked to carcinomas.
- PAINFUL PERIODS
- IRREGULAR PERIODS
- HEAVY PERIODS/FLOODING
- PAIN DURING SEX
- FLUID FLOWING DOWN THE TUBE AND LEAKING FROM THE VAGINA
- FURTHER SURGERY (Usually Salpingectomy)The tube often needs completely removed due to hydrosalpinx and infection. This can lead to reduced ovarian function.

Here are some medical links on Fimbriectomy:

http://www.popline.org/node/450054

http://www.ncbi.nlm.nih.gov/pubmed/16154047


Fimbriectomy was a common form of Tubal Ligation in the 1960's!! It is now a very rare type of Tubal Ligation - mianly because Dr's discovered its risks and side effects and no longer use it.

My Response

I emailed my gynaecologist in December asking why he had used this harmful procedure against my knowledge and consent. He would not reply in writing but invited me to attend his office for a meeting. I obviously declined to meet with him.

My symptoms continued and I started to get tinnitus in my ears (ringing). My vision started to become blurry. The weight loss was starting to become unhealthy and my body mass index dropped to 19. Every time I ate even the smallest amount I would have diarrhoea and gas pains. My body constantly ached, I started having hip pain and my ankles started cracking. I was afraid if I went back to the Drs I would be labelled a psycho...

I did not feel that I could continue to live this this...

 Basically my options were to live like this, waiting for hydrosalpinx or infection and I would need another surgery anyway (complete removal) or attempt a sterilization reversal repair by salpingostomy and preserve the tube. I did not want to have a salpingectomy because I was afraid this could result in an earlier than expected menopause. I could not have my tube re-attached because there was only one long piece of tube, so the end would have to be re-opened and a new opening re-constructed.

Here is a link which explains what salpingostomy is and shows a small video:


It is not tubal reversal as in (TR - tubal reanastomosis) - it is (TR - tubal repair). The chances of it being successful are rather low - 25% at best (but then success is measured in terms of pregnancy). I was looking for symptomatic relief. Tubal patency (the tube remaining open) can be as high as 80%.

I decided to take my chances............. 





My Tubal Repair Surgery



On 25th February 2014 (approx 13 months after Tubal Ligation), I had a sterilzation reversal performed by Dr Pickles at the BMI Park Hospital in Nottingham, England. Here is a link to his website and PTLS blog:

http://www.femalesterilizationreversal.co.uk/about-us/

http://www.femalesterilizationreversal.co.uk/why-sterilisation-reversal-may-be-the-answer/

To get there I took 2 planes, a 1 hour car journey and on top another 7and half hours train ride! 

As you can see I was very determined to get there and be well again!

Within 24 hours of having the open abdominal surgery my "flu" like feeling was gone.

My mum said that I had a prickles under my skin and straight after surgery they were gone. My skintone and colour changed immediately to healthy looking and glowing. My mum said that I had been looking 'grey' previously. All of my friends told me later I'd been looking terrible and not myself. It was as if I had been drained of colour and all the colour flooded back.

Dr Pickles came to see me and told me the surgery had been a success. When he entered the abdominal cavity he had found the fimbrial ends of the tube next to my ovary. Dr Doom had just cut them off. Dr Pickles lyced the dead scar tissues away and created a new tubal opening with fine sutures in the shape of a flower. Infact he made a quadrant shaped flower - exactly in the same shape of a four leaved clover.
My tubal lengths are now 7cm on each side.

I was so hungry when I woke from the surgery that I just ate and ate and ate!!! Nausea was ALL gone and appetite was back. 

I did not find the sterilization reversal surgery even half as painful as the TL, despite having a 10cm abdominal incision and open surgery. I only have a tiny scar on my belly button from TL. It's not the scar on the outside that shows the level of pain, it's what goes on inside your body (which you can't see), that tells you when something is wrong. No searing abdominal or tissue pains. Just a little uncomfortable from the incision obviously. My pelvis and abdomen felt good and "normal" again. It's very difficult to explain what I mean, except to say the "horrible" feeling was gone from my organs. Imagine tying an elastic band around your finger and it going numb.... that's how my insides had felt. It was like it had just been snapped!

By the next day I was up and walking about, I even popped down to see Dr Pickle's secretary, Mandy, to thank her for all her help! It was so nice to meet her. A day later I was discharged and took the long train/car journey back to my parent's home. I wont lie - it was a tough jouney just after having an operation!

My bowel movements returned to normal immediately and I had no pain when I needed to go!

I am eternally grateful to Dr Pickles. 

My Recovery from PTLS

I returned to the loving care of my parent's home. I had just as much rest as I needed, care and attention. I had the odd ache here and there just from the surgery and gas pains from the gas they put in your abdomen. After a couple of weeks I started to move around more and venture out... like to the corner of my parent's home and back. I gradually built up my fitness. My advice to anybody..... take it very easy to begin with... sleep, rest and let things inside heal.

I was soon able to go to The Salvation Army with my mother and children, the congregation had been praying for my recovery, which I am sure helped and I'm very grateful for. I enjoyed being there with my family and just finding myself again. I prayed and made thanks for being given a second chance.

Here is the amazing part:
Post- Surgery - MY PERIOD CAME ON TIME!!!!
The first one was quite crampy but due to my inactivity I think. My uterus was also contracting and I felt like it was expelling the old lining that had been building up and wasn't being previously expelled. It lasted 7 days (which is an improvement from 10-17 days). The bleeding was heavy but NOT flooding. I had no leg/hip pains.

I have had a further 3 periods since and they have all come on time and no spotting inbetween. I am back to 28 day cycles.

With my 2nd & 3rd period I had some brown spotting at the beginning and end and they lasted 7 days. The cramping changed to mild cramping which was easily resolved with a paracetemol (although I had no cramping at all before any surgeries). NO flooding. NO abdomen or leg pain.

My 4th period - I had NO brown spotting at the beginning or end of my period and the bleeding reduced to 6 days. The blood flow is heavy/normal for me (I was always on the heavy side). I still have mild cramping but it is less.

Every cycle that passes I can see improvements.

I no longer suffer from Post Tubal Ligation Syndrome.

I have lots of energy and I am very active like a woman of my age should be.

I no longer experience heat flushes, night sweats, sweating, body odour, headaches or tinnitus.

I no longer suffer from back, abdominal, hip, sexual pain and body aches of any kind.

My appetitite and digestion has returned to completely normal. I have put on 2kgs.

My vision is normal and I can think better.

My breast mass is just starting to come back.

My hairdresser has seen new growth of hair all over my head.

My nails and skin have returned to normal now (although I did have a spot outbreak while my hormones were adjusting)

What didn't go away: the extra body hair (on my stomach). Some mild period cramping.

How I Feel Now


I feel blessed and grateful every day that I wake that I am free of this disease. I had been afraid that the 2nd surgery would not work but it has. I am the happiest that I have ever been in a long time because I have my health back. It is something you take for granted until you loose it. Most importantly I love the body I live in.

Additional Links

The Chapel Hill Tubal Reversal Centre in the United States has reported a 90% success rate for relief of Post Tubal Ligation Syndrome: http://press.tubal-reversal.net/2008/post-tubal-ligation-syndrome.html

Here are some links if you require further PTLS information and support groups:
 http://ptlstuballigationpain.blogspot.com/p/twitter.html (you will find links to support groups in the support and education section, lots of info!)
http://www.tubalconnect.com (lots going on, meet with other women and find out what some Dr's have to say in their monthly meetings)
http://truthaboutsterilisation.weebly.com/ (UK ladies website)

Please sign the PTLS petition - by Janine Brockway - group leader of the support group "Post Tubal Ligation Group (UK sterilized sufferers)" on Facebook:
http://www.petitions24.com/require_doctors_to_inform_women_of_ptls_before_a_tubal_ligation


REMEMBER THERE IS HOPE!









I FINALLY GOT MY HOSPITAL NOTES IN MAY - NONE OF THEM INDICATED FIMBRIECTOMY.

MY MESSAGE:

BELIEVE IN YOURSELF AND TRUST IN WHAT YOUR BODY TELLS YOU!


3 comments:

  1. Wonderful read, congratulations to finally finding the end of that road and getting off, yes there is hope, 17 years of hell for me and i cant believe the difference after 3 months, welcome back to life honey xxxxxx

    ReplyDelete
  2. Nice story, Post Tubal Reversal syndrome creates problems for many women. After its reversal, a woman can get more children.

    ReplyDelete
  3. Thank you so much for putting your experience out here to we can read and learn from it. Hopefully doctors will one day let women know about all the possible side effects a tubal ligation might cause.

    ReplyDelete