It has taken me time to eventually get back to write my follow up blog regarding endometriosis. Not because I was busy but quite simply because I was and still am very much suffering post surgery and I am still going through my recovery phase.
I would like to start by saying however, that I was truly overwhelmed by the number of Facebook messages, tweets, emails and phone calls that I received from ladies all over the country to thank me for writing a blog on endometriosis and for bringing this cruel, painful and debilitating condition into the public forum. I was very shocked and very saddened by the number of women that suffer in Ireland on a daily basis with this condition – particularly when I spoke to patients who have advanced levels of the condition and now have very serious health complications as a result.
I will briefly start by explaining what endometriosis is but I have already written an extensive piece on my Blogspot that explains my story regarding endometriosis to date. If you have not read the first blog that I wrote, I suggest that you do that now before continuing here – http://sandraisinthecity.blogspot.ie/2016/03/what-is-endometriosis.html?m=1
Endometriosis is a disease in which tissue that normally grows inside the uterus grows outside it. The main symptoms are pelvic pain and infertility. Nearly half of those affected have chronic pain, while in 70% pain occurs in menstruation. Pain during sex is common. Infertility occurs in up to half of women affected. Less common symptoms include urinary or bowel symptoms. About 25% of women have no symptoms. In essence though, it is a very painful condition where the tissue that normally lines the inside of the uterus (endometrial implant), grows outside your uterus.
In endometriosis, displaced endometrial tissue continues to act as it normally would – it thickens, breaks down and bleeds with each menstrual cycle. Because this displaced tissue has no way to leave your body, it becomes trapped. When endometriosis involves the ovaries, cysts called endometriomas may form. Surrounding tissue can become irrupted, eventually developing scar tissue and adhesions – abnormal tissue that binds internal organs together.
It must be noted that the only way that endometriosis can be diagnosed is by having a laparoscopy with a skilled gynaecologist in hospital. A laparoscopy is a medical procedure done under full general anaesthetic whereby in general, 3 incisions are made into the abdomen. Your abdomen is filled with CO2 gas so that it inflates to give the surgeon a very clear view of all of your internal organs and also so that with the extra space, there is ability to move around the organs and to begin treatment if you do have endometriosis and in my personal case, fibroids and cysts. If you are going for an investigative laparoscopy, you can expect to spend 30-40 minutes in theatre but if you are any way advanced with the condition, you can be in theatre up to 3 hours, like my last experience.
This laparoscopy was my 2nd laparoscopy. My first lap, took place in April 2015 in Cork and this one that I had this April was a very different experience. And I mean that in a very positive way.
With sincerity, I did extensive research in sourcing an expert gynaecologist who specialises in endometriosis. I also wanted to ensure that this gynaecologist was an excellent surgeon. But I also wanted a doctor who was “patient centred” and had a primary focus on what was truly best for each patient that sat in front of him.I can only go on my own personal research and my own personal experience but I was very saddened to find that a consultant fitting that criteria was not to be located in Cork. I guess that, like all professions, they can’t be good in every single aspect – it would be like asking a family law solicitor to represent you in a criminal case – You’ll get representation and get the job done – but it might not be to the outcome that you desire.
There is a very personal reason that I went on such a quest to find the perfect surgeon and that was, when I had my first laparoscopy in Cork, as I was waking from the general anaesthetic, I will never forget, the surgeon came in and stood at the end of the bed and said “You’re a lucky girl that you still have your ovaries. The endometriosis was very badly stuck to them and I barely saved them for you”. To me, it sounded as if he was referring to my tonsils or my appendix. I was obviously quite disoriented at that particular moment in time but I distinctly remember trying to stop the bubbling of tears that so desperately wanted to come. It was the tone and the matter of factness of what was said and all I could think was that – ‘within one fell swoop, within 15 seconds, my life could have been changed forever. Any further chance of having a baby would have been removed. Just like that’. These thoughts stayed with me. I didn’t talk about them openly as I just felt too sad to actually verbalise what had been said. And I know, things could have been so much worse but I felt my heart break a little that my chance of becoming of Mum may never come to fruition if I ever do decide that I would like a baby.
For those of you that know me, you’ll know I’m definitely no Mary Poppins, and am fiercely independent and career driven – but maybe someday, I will change my ways. But all I know is that I don’t want that choice removed from me without thorough and valid medical consideration.
In fact, a funny side story relating to having a baby is that when I had my consultation with the expert gynaecologist, Prof. Ray O’ Sullivan, he asked the usual questions, one being –
“So Sandra, have you children?”
Me: “No Doctor”
“Ok, is this by choice or it just hasn’t happened?’
Me: “(sigh) It just hasn’t happen *shrugged shoulders with surprised look*
“So you’re having fertility issues then?
Me: (exasperated) “No doctor, I haven’t found a man to have a baby with just yet! Jeepers Doc”
*Cue howling laughing*
So after combing the country from top to bottom, I found the surgeon that I had been looking for, in Kilkenny. When doing research I got about 8 testimonials from previous patients of his, and all had only positive feedback and successful feedback so I went and made my appointment.
I was seen in his private rooms within a few weeks of calling his office and he scheduled a date for a laparoscopy for May 2016. Due to complications and bleeding in my bowel, I had to have emergency surgery with Prof O’ Sullivan on Monday 11th April 2015.
On the day of surgery, I was terrified.
I have to say, that the full team at Aut Even Kilkenny are very skilled in patient care and I was made to feel as comfortable as possible for the situation that I was in. I was dreading the general anaesthetic as I never react well on waking and always suffer horrendous side effects which include, fainting and vomiting.
The anaesthetist that was looking after me was so kind and assured me that by proper management of each patient, that no patient should suffer such awful post operative side affects – and he was not lying. He administered extra anti nausea medication whilst I slept and when I woke, I was not half as unwell as I usually would be.
I was equally terrified of being put to sleep but with the very kind anaesthetist that was looking after me and the wonderful theatre nurses who kept me calm and kept assuring me that I would not die mid way through the operation, I did relax. I relaxed to the point until I heard “now we’re putting in the propanol” and then I yelped “isn’t that what Michael Jackson used?’…..but almost instantaneously, I was asleep.
Of course, after waking I was in a lot of pain and discomfort but the medical team kept a very close eye and kept the pain at a level that was bearable. Prof Ray O’ Sullivan then came to see me and even his presence reassured me that my operation had been successful and that I was safe. He did say that the endometriosis and fibroids were very extensive but he got them all. He excised and treated everything that needed to be treated and that once I recover (which will be a few weeks), I will be a different woman. I will have energy, be pain free and my immune system won’t be as compromised due to the fact that I won’t be fighting the daily pain of endometriosis.
I stayed in hospital for pain management for a few days and then came home to recuperate. I will not lie – the pain is excruciating. The tiredness is equally difficult. Unfortunately for me, I came down with a post surgery infection which I am still trying to battle. This infection is definitely increasing the pain and the tiredness but hopefully, within the next few days, I will be brighter and back to myself.
Once my infection has been cleared, I will then begin a course of treatment for 3 months in the form of injections to “mop up” any remaining endometriosis. Unfortunately, endometriosis is an autoimmune condition that will last for life. It has no cure and can only be managed. I hope that once I have the injections that I will have relief for maybe the next 5 years.
So, for now, I’m excited about getting better and excited about a pain free Summer ahead. I am definitely planning a return trip to Kilkenny very soon to explore the beautiful city but I’ll be most likely located in Mount Juliet as opposed to Aut Even, and my choice of pain relief will be Prosecco instead of pethidine.
Since I have been to see Dr. O’ Sullivan, I have also sent friends who are just thrilled. I will not talk about individual cases but all I will say he is Dr. O’ Sullivan has given them hope. Hope that had been removed from them by any previous gynaecologists that they saw.
Like always, I am not a medical doctor and not in a position to give medical advice with regards to endometriosis and I am only writing about my own personal journey.
If you would like to contact Prof. Ray O Sullivan, you can locate him here http://www.womenshealth.ie/ and appointments can be made for his private rooms. I think that he also runs a public list in St Luke’s Kilkenny. https://www.facebook.com/Womens-Health-Group-163639080378636/
I do hope you have enjoyed reading.