Information overload...my head is spinning!!

[CiaraK]

As I read many of the stories on this website I feel like I could be reading my own story....it all sounds so familiar. I was put on the pill when I was 15 because of the horrendous pain I was in when I had my period and stayed on it for many years. I tried to come off a couple of times but never lasted more than a couple of months because of the pain.

When I was 24 I started having problems with my stomach and was diagnosed with IBS. The pains continued particularly around the time of the month, My weight changed on a monthly basis, I had mood swings and battled with depression trying several different type of anti-depressants and I felt pretty down about myself, but I had just accepted that this was the way it was going to be. It was a condition that didn't seem to have any real treatment available.

I finally came off the pill 2 years ago as I felt that my body had had enough and the pain was there whether I was on it or not so why stay on it? I wasn't using it for contraception as the IBS made it ineffective so why continue...at this point I'd been on the pill for about 14 years.

Last year the pain began to change and I started getting intense sharp pains in my right side which were magnified during my periods. I went to my GP several times but just got the same story...bad period pains and IBS, take stronger pain killers. In November I finally found a doctor who would listen....she wanted to refer me to the gynae department of my local hospital. Endo was briefly mentioned at this point but it needed to be investigated. She put me on Cerazette to try and reduce the pain, but it only worked for a couple of months.

In March this year I finally had my gynae appointment. I had an internal ultrasound and the doctor discovered a large cyst approx 5cm. He told me it was a simple benign fluid filled cyst...nothing sinister. I asked if there were signs of endo but was told no, simply a cyst. At last I thought I had an answer. The doctor advised me to come back in 3 months to see if it was still there.

Within 2 months I was back as the pain was getting out of hand again. At this point the doctor said the cyst had grown considerably and I needed to have it removed. Because of the size he told me he wanted to perform the laparoscopy within 4 weeks. After 3 weeks and no appointment I ended up in A+E and was eventually transferred to the gynae ward in another hospital. The cyst had grown...it was now 8cm X 7.5cm and appeared to be leaking into my abdomen. I was put on the list for emergency surgery and was relieved that the pain was finally going to stop.

I had my surgery on Saturday 15th June....it was to be a short procedure to drain and remove the cyst and should have been a straight forward recovery. On Sunday 16th the doctor came to see me in my side ward and closed the door. The surgery had taken over two hours and they had found something. The cyst was not a simple fluid filled cyst...it was a large 'chocolate cyst' on my right ovary, and on further inspection they found another on my left ovary. They wanted to remove it also but the couldn't because of the damage....I had stage IV endometriosis and my left ovary was buried in scar tissue. My womb, left ovary and bowel are fused together with large amounts of scar tissue causing the pain I have been experiencing for so many years. They could not remove the second cyst as it could damage the bowel and more invasive surgery will be needed to fix it.

Before I had a chance to get my head around this the conversation turned to treatment...I will be getting monthly injections to induce a chemical menopause, in 4 months I will go for an MRI to map the damage and prepare for surgery, then in six months time I will be taken in for open surgery with the gynae consultant and a bowel surgeon to try and fix the damage and salvage my reproductive organs.

My head is spinning....I'm going to be off work for at least four weeks for an op that should have had a recovery time of about a week, I have months of treatment ahead and I'm still in a lot of pain. I'm 31 and have no children yet, but the possibility of having children now has suddenly become questionable, and I'm simply sitting in the house wondering what the hell has happened. I got a follow up appointment card in the post for the gynae consultant but it's not until January (??!!) and I have so many questions in my head...

I don't even think it's all sunk in yet...my mum is more upset about it than I am, I'm just trying to deal with the pain. In a way it's a relief to know what has been wrong with me for so long....even the depression and mood swings could be linked to the effect the endo has had on my hormones for so long. I just don't know what's coming next.

I found this website after googling the condition and am hoping to find other people with the same condition to talk to in the hope that I can try and understand what's to come. I have strong painkillers to help the pain but nothing to help stop my head from spinning!!

[Chrissie66]

Hi Ciara

I was so sad reading your story, I knew where it was headed as soon as the cyst was mentioned. It took doctors 10 years to diagnose me 20 years ago; back then it was kind of understandable because they didn't have the facilities and knowledge that they do now, so to keep reading these stories is heartbreaking.

I'm not going to overload you with more information, I just wanted to say a couple of things. Firstly, although it feels like it, this is not the end of the world, and most importantly, it will not kill you. And I don't meant that to sound patronising or condescending, but what you said about your mum really resonated with me. I was diagnosed pretty much the same way as you, a cyst twisted on its stalk and leaked which caused me to collapse at work, and when they did the scan they had no idea what they were looking it. It was thought that it could be cancerous, and I had to sign a consent form for them to whip everything out if they got in there and things were nasty (it was a full laparotomy back then). My mum was devastated, I think more so than I was, and the very first thing she said to me when I came round wasn't "How are you doing?" it was "You've still got your ovaries!" I think mums look at the long term, we just have to cope with one day at a time. Anyway, I was told I would never get pregnant naturally, and I did. And so do lots of other people. Obviously it's better not to have endometriosis, but a diagnosis is not an automatic shut down of any hopes of having children.

Secondly, I can highly recommend the book Endometriosis For Dummies. I wish it had been around when I was diagnosed. The last thing you need at this point are dry medical texts. and the Dummies books is the direct opposite of that; it gives you all of the facts in simple to understand terms and you can dip in and out of the bits you need as and when you need them. It's like you're having a chat with a friend.

A follow up appointment in January is mad, I understand why they've done it, because it follows the timeline for their treatment plan, but it doesn't help you. Phone your consultant's secretary and explain that you have loads of questions and would really like to speak to somebody before you get to January and it all starts happening and I am sure they will see you sooner than that.

In the meantime, ask any questions you have on here. The thing about endometriosis is that it's different for everybody - people's pain is different, people's treatment experiences are different, people's reactions to treatment are different so there is no right or wrong in any of it (unless anybody tells you that hysterectomy cures endometriosis; we're pretty much all agreed that that's not the case) - but we'll all have been through it.

Sending massive hugs. And get that book!

Lots of love

Chrissie xxxx