There is hope!

[Toffi]

Hi guys. I've only come on here to tell you that there is hope. I've had painful heavy periods since I started at 11 yrs old. Each month I was crippled with pain, sickness, weakness. I was literally bed bound for at least 2-3 days and the rest I forced myself to get out of bed and have a life. I was in and out of the doctors with all sorts of painkillers but nothing helped. At 26yrs old a gynaecologist tried to check inside and caused me so much pain and was so horrible to me because I couldn't let her continue that I never went back. The pain got worse to the point I was in pain a week before I was due on and periods that lasted 13 days and only had about a week of no pain. This continued until I got married at 29yrs. We tried to have kids but nothing happened and the pain got worse and lasted longer. Couple of years after we went for our first IVF but were unsuccessful and my symptoms were excruciatingly worse after. I made the specialist book me in for a lap to try and help but he checked and said I had cysts on my ovaries but the endometriosis was too bad to touch. I was put on zoladex for a few months before trying a second IVF which was unsuccessful and again my symptoms after were much worse. We tried IVF a third time, after a different consultant decided to do a lap and remove one of my tubes which had folded over and got stuck. Again no luck. And my pain was worse. After the end of this I spent the following months in so much pain I was on every painkiller. Paracetamol, ibuprofen, dihydrocodeine , amitriptyline and morphine and buscopan and sickness tablets.Nothing helped. I was in pain everyday now. Barely slept. Spent half the day writhing on the floor crying. Nobody could help. By this time I had asked to go back on zoladex to stop everything but was told I'd have to wait a few months for a consultant appointment and that a hysterectomy was my only real option. I very nearly swallowed a whole bottle of morphine because I wanted it to end. My husband took me to a private consultant who in one consultation told me exactly what was wrong. I had severe endometriosis covering most of the pelvic organs, with a large nodule in the rectovaginal area, the bowels were stuck to the uterus, I had ovarian cysts and fibroids. I was told I would need a hysterectomy and open surgery to remove the endometriosis and possible removal of my lower bowel with the risk of having a temporary/permanent bag. As you can understand I was devastated but was wiling to go ahead. Later that day my husband suggested we get a second opinion. We found Mr A K Trehan on the internet by pure chance, booked an appointment and I can honestly say he was a godsend. I had two operations involving laparoscopic radical excision of the endometriosis and ovarian suspension and 2yrs on I have all my insides intact. Recovery time after each was only a few weeks and now I hardly even know when I am due on. This month I've not even needed paracetamol. I feel like a new person. Yes I've had to spend a lot of money to get here but it was worth it. I've only gone into this much detail to let you know that no one ever mentioned this option to me otherwise I would have had this done years ago and maybe had a better chance of getting pregnant and not had to go through so much pain for so many years . Other women in my situation have gone on to become pregnant so I still have hope. I just wish that GP's and consultants would be more honest about what our options are. I hope this post helps even just one person to get to where I am now. X

[KatieTattie]

I am so pleased that you are out of pain!! That's fantastic news! You say your recovery was a few weeks.. That is amazing. I had the same op with Mr T in November and I'm still in a lot of pain. I've been speaking to a few other women in the same position as me too who had the op around the same time. We are all really hoping that it's still recovery pains but we're all loosing a bit of hope to be honest. So pleased for you though! I totally cannot imagine feeling better than normal two weeks after this op.. I struggle to walk the dog and do the shopping nearly 3 months on! Are you taking any bcp? Cxx

[Toffi in reply to KatieTattie]

Hi, after the first one I was back at work the next week. I wouldn't recommend that but the staff took it easy on me lol. The second time round was a longer procedure and most of my recovery was from the medication and the gas they put in to inflate your insides. I was sore and bruised but honestly after all the pain I went through before I coped. I really hope it will be the same for you. Remember veryone recovers differently. Every month Mr T gets my blessings and I've not had the chance to go back and tell him xx

[KatieTattie in reply to Toffi]

Thanks for your reply, I'm so glad you had an easier time of it. Would just be good to know why me n the others are struggling so much. That's amazing you going back to work so quick! Was the first op a diagnostic lap? hope you enjoying being psin free and getting on with your life! It's seems further n further away for me at the moment!x

[Toffi in reply to KatieTattie]

My first op was diagnostic but he cleaned up aswell. Had a few cysts on each ovary removed and had a nodule and some endometriosis shaved first time round and he suspended my ovaries . Then a few months after I had everything else done. Everybody's pain threshold is different don't worry too much. What did you have done and what kind of pain ate you having now? Are you still on zoladex? X

[KatieTattie in reply to Toffi]

Yeh I guess everyone is different.. Thought I was pretty tough though as I had a baby with no pain relief m thought it was a breeze!

[KatieTattie in reply to KatieTattie]

My messages keep getting cut in half!! Erg! No never been on zolodex or any bcp for 8 years but thinking about it now! Were you on any bcp after the op? Thsnks for taking the time to reply btw x

[Toffi in reply to KatieTattie]

Sorry I'm not good at this lingo... what is bcp? X

[dabba76 in reply to Toffi]

I think it's birth control pills x

[Toffi in reply to dabba76]

Thanks x

[KatieTattie in reply to Toffi]

Birth control pills x

[Toffi in reply to KatieTattie]

No unfortunately I suffered quite severely with migraines so my GP never allowed me to use them. Also I'm always in the hope that I will become pregnant naturally someday so never use them x

[dabba76]

That's amazing news. So pleased for you!!! I saw a article on Dr T and TPE, made for very interesting reading. It's great to hear a success story (I know it wont work for everyone). Best of luck TTC xx

[Toffi in reply to dabba76]

Thanks. I just hope my little post will encourage others to look for more options than getting a hysterectomy xx

[Livvie01]

Thank you! I'm so happy I looked in! Have gynae appointment in 2 hours and want a referral to Mr Trehan!! Now I feel a little braver!

[Toffi in reply to Livvie01]

All I say is keep an open mind and make sure you know all the details before you agree to anything. Mr Trehan told me that if I had come to him first he would have tried saving my other tube too. But you live and learn. I've met so many women who have had hysterectomies and are still suffering in pain. So just don't jump into anything xx

[Hidden]

What a fab ending

[stevieflp]

Hi Toffi - I can vouch for what you say and am really happy to read your outcome but sorry for what you went through leading up to it. I underwent TPPE with said surgeon and had been in your position where i was in too much of a mess for any other surgeons to sort and was told a hysterectomy was my best chance - with endo everywhere in the peritoneal cavity, this was of course totally inadequate treatment / advice. It was like a breath of fresh air and total relief when I came across this surgeon with this approach to endo.

I too have been free of any signs of abdominal pain/endo since my op and that was 5 years ago now - and I had it everywhere. My op lasted c8 hours and I had ALL endo removed. I dont consider myself to have endo anymore but see it in the past tense.

We so need more surgeons with Mr T's expertise and skills and approach to endo surgery - I am at a loss as to why, with this surgeon having pioneered this surgery some time ago, the others are not yet up to this procedure with the nearest ones only doing wide excision or radical excision, which is not the same thing at all. I suspect it is possibly because it is gruelling on the surgeon doing such long ops, takes up a lot of theatre space so they can't see so many patients and takes total dedication to get to that level of skill. We should demand no less though than TPPE being a gold standard treatment for advanced endo.

[durdledoor]

Thanks so much for sharing your story!