2021, update

 Well it's been 3 years since my total hysterectomy and I can honestly say its the best thing I've done. My pain use to be so severe and my bleeding etc so bad that now I just feel at peace not having the flare ups and being off work in pain. My weight is still up and down a bit but that's fine with me when I'm not in pain anymore!! I'm 40 next year and feel a lot of my younger years were lost with pain and hospital admissions but I have my 2 gorgeous kids so i would go through it all again for them. I'm here for anyone who is struggling or needing advice or someone to speak to so please just reach out. Lately endometriosis is becoming more spoken about which is brilliant but wrong surgical procedures are still being carried out due to the lack of understanding of the disease which causes the endo to get worse.  I've been through it and know a lot of people are struggling like I use to. Sending love to you all xx

Hi guys
Its now November 2018 and i am 36 years old.   I thought i would update you all
For the past 3 years ive had the pain and bad periods slowly coming back. Ive had 3 coils fitted and a few different contraceptive pills, none have really helped and i knew deep down the endo was slowly coming back. Unfortunately Mr Trehan has now retired and i was referred back to the NHS gynae. I had a lap and they said i did have some endo back and i was stuck together inside due to all the scar tissue from all my previous operations but that this wouldn't affect me having pain etc.
Each month the pain was coming back worse and i wss only having around 1 week pain free a month. I wasnt getting anywhere with the NHS so knew before i got into the state i was before i had to find a private surgeon. After googling and doing a bit of research i found Mr Gan who i was told is actually Mr Trehans replacement. I went to see him in June 2018 for a consultation and he got me in for another lap. I had this in August 2018. When i went to see him after we had a long discussion and decided the way forward was excison of endo (again please never have it lasered, it just returns more aggressively), hysterctomy leaving my ovaries and he did say i would need all the scar tissue that is stuck together unsticking as this can cause pain and other side effects.
I had this op on 15 November 2018 and i am recovering at home. I was in theatre around 4 hours and in the 3 months since i had my lap the endo had gone all over my c-section scars and even my urethra. This was all excised, i had my hysterectomy and he managed to successfully unstick all the scar tissue. My bowel was stuck to other organs and when i go see him again in 3 weeks time he will go into more detail and show me the pictures. After 15 years of suffering from this awful disease im hoping i can finally see the light at the end of the tunnel. Im sore and still cant do much but hopefully it will all be worth it xxx

2013...My new family X

I haven't been on here for a few years, to be quite honest I had forgotten all about my blog.  I'm very shocked to see all the views I have had on this blog and am very happy for all the lovely messages from people. I thought I would update my blog to let people know how I have got on....

From having my son Alex in 2008 we couldn't be happier, we felt very lucky indeed.  By 2010 we decided we would like to try for another baby so I came off my contraceptive pill (I was taking Dianette for my PCOS which does help all PCOS symptoms).  I was still taking Metformin (to help me ovulate) so I knew I had a good chance of getting pregnant I just didn't know how long it would take.  This time I didn't get myself so worried about not getting pregnant straight away as I knew I could get pregnant with having Alex and I knew that getting worked up would only delay the process longer.  It did take a long time but in March 2012 I found out I was pregnant again, we were so happy that it had finally happened.  My pregnancy went well and again I took the Metformin for the first 12 weeks of pregnancy and on 12 December 2012 we had a healthy baby girl by caesarian section.  Isabella is now 5 months old and she is gorgeous.  We know we are very lucky to have our 2 beautiful children and it has taken a lot of time and worrying to have them but I just want people to know it is possible.  I know they'll be some people out there who are at there wits end thinking it will never happen, but with the right treatment and the right consultants it can happen.  Don't be fobbed off by GP's and Consultants, if you aren't happy with the treatment you are getting say something and demand to be seen by someone else, GP's and Cons don't always know best!

I would like to thank Mr Trehan for all the help because without him we definitely wouldn't have our 2 children who are truly the best things that have every happened to us!

You can access Mr Trehan's website on the link below:

www.endometriosis-consultant.co.uk

The POSITIVE Pregnancy Test

I'd started my Metformin in October 2007 and was feeling better than ever. My periods had been now regular since March 2007 but in January 2008 my period didn't arrive. I decided to take a pregnancy test but didn't want to get my hopes up or anyone else's so I did this test by myself without telling anyone I could be. I can't explain the feeling that went through me as the test said Positive! I was shocked and overjoyed. My mum was shopping with me on that day and I ran out of the local Church cafe toilet and waved the positive pregnancy test in front of her face, she was as shocked as me. I then got on the phone and told my boyfriend who was over the moon. It had taken 3 months for me to get pregnant from taking the Metformin. Me and my boyfriend hadn't been using Contraception for a few years trying to get pregnant and now we were. I had to see Mr Trehan throughout the pregnancy to check how I was and he was brilliant and helped me a lot. We were given the due date of 26 October 2008. I was quite anxious throughout the pregnancy and kept thinking something could go wrong but everything was fine. I had to take Metformin for the first 11 weeks of my pregnancy because it gives the baby some protection that my body can't give it with having PCOS. My due date came and went and I had to be started off because I was 2 weeks overdue and I ended up having a caesarian section on 8th November 2008 and had a healthy baby boy who is the most perfect thing ever.
It is now May 2008 and my son is 6 months old and even more perfect then the day he was born. I am still pain free and regular with my periods and feel great. I'm still taking Metformin to help me with my blood sugar and weight and Mr Trehan says I'll be fine to have more children. Everything has worked out perfect for me, I've had a good few years of pain and distress but I've got there and I just want people to know that there is a light at the end of the tunnel. I've written on forums in the past and one specific girl was only in her twenties and her endo was that bad she was going for an elective hysterectomy because her consultant told her there was nothing more they could do (she'd had a number of laparoscopies like me and like me had the endo lasered away each time). I told her about Mr Trehan and that he sees Privately and she went to see him and he did the same op that i had (Radical Excision of Endometriosis) and her endo had spread over her ovaries and he had to take one of her ovaries away but told her she would be able to have children which is what she wanted so her story also ended up being great. I would recommend this operation to anyone, even if your symptoms aren't that severe they normally do get worse unfortunately so ask your hospital about this operation, please do not go through with the lasering because its just pointless and makes symptoms worse. There's also consultants that do this op privately (Mr Trehan also does and is the Endometriosis Specialist and speaks and does lectures all over the country on it). For more information please visit is website on www.keyholehysterectomy.co.uk www.endometriosis-consultant.co.uk
If anyone would like anymore information please do not hesitate to contact me or even for a chat, i know what its like to suffer from this horrible illness and I would like to say a big Thank you to my family especially my mum and wonderful boyfriend for all there support and love x x

The BIG operation day finally here!!

My boyfriend and family had been absolutely brilliant through all this and they were definitely more anxious and worried about me going for this op, especially knowing it was a major op. I was obviously very nervous but I'd had a few ops before so it wasn't so bad. I went in for my op at 9am and came out just after 2pm. When I came round from my operation my mum and boyfriend were there. When Mr Trehan came round to see me he told me I'd had grade 4 endometriosis which is the worst grade and the endometriosis had spread all over my bowel. When I look back now I remember starting with irritable bowel syndrome about a year before my op and this is why, the Endo was travelling everywhere. It can be dangerous and break off and travel to places like legs and even brains which is scary to think about. I know a girl who was having really bad knee pains and after months of examinations it was found she had endo and that was the cause.
He then went onto tell me that he'd also found cysts on my ovaries (PCOS) and he'd lasered these away.
When I got home I felt a lot sorer than any other operations but still not has bad as I'd expected to feel and I'd only had to stay in hospital a couple of days. Within days I started to lose weight which I couldn't believe and within a couple of weeks I'd lost at least a stone and I felt better in nearly every way, it was unbelievable. I had my post op appointment with Mr Trehan in October so I'd a long time to wait to see him but he wanted to leave me that long to make sure no symptoms came back. Within 2 months my periods became regular and best of all I was pain free, the first time in years. I had energy and never felt so good. By the time I saw Mr Trehan again I was over the moon with his op (even though my weight had crept back up due to the PCOS). He went on to tell me my weight wouldn't go down with just dieting because of the Polycystic Ovaries which sadly there was no cure for. He thought the Polycystic Ovaries had just more or less started and they can be started by having Endometrosis for a long time and it not being treated, this was definitely why I'd got it I thought. On a happier note he told me my Endo will never return or if it does it will be when I'm in my forties or fifties all because it had been cut away. I thought all those years I'd been miserable and in pain and had pointless operations when all I needed was this one op he'd performed. He then went on to talking babies and pregnancy. One thing I was dreading because I thought all he'd say was I wouldn't be able to have them naturally. I was very wrong. He told me I could get pregnant now the endo was gone but the one thing stopping me now was the PCOS. I told him me and my partner wanted a family and he decided to start me on Metformin straight away. Metformin is a diabetic medication but helps PCOS. It helps ovulate (produce eggs) and also helps control weight by helping the sugars in the blood. I started taking Metformin in October 2007, it wasn't a definite I would get pregnant but it could only help. I had to have hope but didn't think it would be soon if anything at all was to happen, I was wrong again!!

Seeing Mr Trehan, the best Surgeon EVER

Before seeing Mr Trehan he sent me a letter to go for Prostat injections. I had them for 6 months and they stopped my bleeding and pain too which is a sign patients have endo. I didn't really feel anything when I was due to see Mr Trehan the Endometriosis Specialist, I just thought the same old thing would be said and I would get anywhere. My mum came with me to see him (has she always did, I wouldn't have got this far without her) and I explained all my medical history and symptoms. When I told him I'd had 5 laparoscopies in all he actually didn't believe me and had to look in my notes to make sure. He was shocked and disgusted. He went on to explain that Endometriosis should NOT be cauterised (lasered) away as it ALWAYS grows back. He was more shocked that they were doing this procedure at the hospital where he worked. He said laparoscopies should be done to diagnose endo but lasering it away does not do anything only makes it grow back more. He showed me the picture of my Endo at my first laparoscopy and it was a dot then he showed me the pic on my 5th laparoscopy and it was about 5cms long. He explained that unless endo is CUT away from the source it will just grow back and when it grows back and there's more of it, it obviously gets worse. My Trehan then went on to say there was an operation that could help me and he was one of the only Consultants that did this operation. Its called Radical Excision of Endometrosis. He told me it was the most major gynaecological operation and could take up to 8 hours (depending on how bad the patients endo is) because the endo had to be cut away. I didn't hesitate and straight away said I wanted the operation, I would have tried anything he would have said at that point. I'd been bleeding now almost constantly for about 4 years and I was now about a size 14. This time it felt different, it felt like he had listened and actually knew what he was on about. I had my pre op and was due to have my operation in January 2007 (I was 24 years old). I was now counting down to my op and praying it would be a help, or even better a cure!!

Many years of hell living with Endo...

Since starting my periods at the age of 12 I've always had bad pain and bleeding. By the age of 14 I had started seeing my GP because the pain was so bad but me and my mum just got fobbed off with "it's her age, everyone has bad periods" and other statements of that kind. I was put on many different Contraceptive Pills but most didn't agree with me, either giving me headaches or bringing me out in rashes but most of all they didn't help with the heaviness of my periods or the pain. At school I was having at least 2 days off sick each month at "that time of the month". I was still visiting my GP but still not getting anywhere. When I left school I got a job at my local Hospital as a Medical Secretary. After speaking to one of the Doctors I worked for (who wasn't even a Gynaecologist) she suggested I may have underlying problems and to go to my GP's and insist that I get referred to a Gynaecologist. So I toddled to my GP again and after telling him I was now working at the local Hospital he said straight away that they would refer me to the Gynaecologist (I didn't even have to ask him!). After a few weeks wait I saw a Consultant at the Hospital. She was very pleasant and told me I would need a Laparoscopy to have a look inside my belly and around my ovaries etc to see what was going on. I think I was around 19 and I was actually really happy when she told me they were doing this because I finally thought yes, somethings going to be done and I no longer have to live with pain. Not only was the pain and heaviness of my periods so bad to live with I was now becoming really irregular and bleeding for months on end then just having a few days break. I was also beginning to put on weight. I was a size 8 and within months, no exageration, I was a size 10. I was tired all the time and having sick days off work just like I had off school, but obviously it's different at work, you can't keep having time off. When I went for my Laparoscopy I didn't know what to expect but after I'd come round from the anaesthetic, yes i was drowsy but didn't feel half as bad as i thought, it's only a small procedure really. The Doctor came round to see me after and told me that they had found Endometriosis and that it had be cauterised (lasered) away, they showed me the picture of the Endo and it was just a small dot. A small dot i thought, a small dots caused all this pain!! Once out of the hospital I was so happy thinking i could get back to normal. I wish it was that simple, after only 2 weeks the bleeding and pain had come back. I was feeling worse then ever and having time off work was becoming very often. I was either in really bad pain or was just so tired I literally couldn't get out of bed. I began putting on more weight too and noticing my hair and skin were becoming greasy, all this on top of feeling like crap isn't good! I kept going back to my gynaecologist and wasn't really getting anywhere. I then met my boyfriend Luke. I had my second laparoscopy when I was seeing him but I don't think he really knew the serious of my problems. By the time I'd had my fourth laparoscopy me and Luke had moved in together and wanted to start a family and I was very aware of the problems of becoming pregnant and as my symptoms were worse than ever now, I really didn't think I'd ever get pregnant which made everything even worse. The one thing I wanted was a baby. After the 100th visit or something to the gynaecologist she decided she would refer me to the Endometrosis Specialist who worked at my hospital (I couldn't believe she had never thought to have referred me to him before, me and my mum were stunned). By this time my faith had completely gone and I really thought I'd be stuck with this nasty illness forever, it really did start to get me down and I felt that poorly I just didn't want to leave the house. I was 23ish and from going out all the time and socialising I went to wanting to just lay in bed. Because I was having so much time off work too that was also worrying me. A lot of people I worked with were sympathetic but I know a lot of them were getting fed up of me not being there but until you know the way Endo makes you feel you just don't know, that's why I think people who don't have Endo should read posts and blogs about it to see what it makes people feel like then they might have a bit more sympathy and patience for sufferers. All I could do now was wait to see the Endo Specialist...