So many questions so little time. . . .

[Insidemum]

Hi, I have just joined this forum after speaking to Louise on the Endo UK Support Line earlier today. she was extremely helpful and gave me the courage to come on here and post my many questions. 

I was first diagnosed with Endo in 2000 after laparoscopy number 1. After many hormone treatments I had laparoscopy number 2 in 2006. I was told "it's a mess inside!" and to try and have children as quickly as possible, as the next step would be hysterectomy! 

I have been incredibly lucky to conceive naturally with my 2 children.  Now my youngest is 5 years old the Endo is back.  After a year of suffering with extremely heavy bleeding, worsening severity of pain, cycle related migraines, fatigue etc etc I finally went to see my GP before Christmas. 

I am now booked for surgery on 16th June. I have been given the option of laparoscopy, hysteroscopy, and endometrial ablation OR hysterectomy (leaving my ovaries ). I am booked in at a private hospital, as I used my right to extended choice  (my local hospital has really long gynae wait times). I didn't want to have surgery and feel like I am on a conveyor belt of patients where the consultants are cutting or burning bits out just for case closure.  I feel very confused and overwhelmed about what to do.

Until having a look on here I had never heard of BSGE, now I'm worried I'm not at a specialist centre or have a truly endo focused consultant.  I know my endo was previously stage 3 or 4 and there was some degree of separation done between my bowel and bladder.  I also have a retroverted uterus (I don't know for sure if this is due to endo), so am concerned about outcomes of surgery if I'm not at a specialist BSGE centre. 

I don't know what to do from here so any suggestions/recommendations would be welcome as I only have  7 weeks to go until the proposed op day. 

Thanks

[Tboag]

Unless your surgeon is am endo specialist, which I doubt, if it's not a bsge centre, I would suggest you request a refferal to a bsge centre, if you know you have Endo and it was stage 3-4 this is considered servers and by the nhs contract relating to endo , you should only be dealt with by a specialist, you are better off to wait for a specialist than to have surgery with an inexperienced endo surgeon, xx

[flowflow]

Hi I don't think I will be much use as I'm currently struggling to get anywhere with what's wrong but... I saw someone who was gyno not bsge and I regret it very much. This forum brought to my attention bsge and if I do go down the path of getting help (which I do need to) then I'm planning to only go for bsge centres. I've never been to one so don't know if they are good but I've been seen by 3 separate hospitals so far over last ten years and they didn't even mention endo until 3 years ago, my gp suggested and referred me for lapo but the surgeon didn't do it properly. He based it on the ovaries instead of looking where she asked. It may be worth checking out the bsge centres and just giving the nearest one a ring? Check waiting times etc? Also I noted this when I was looking today:

bsge.org.uk/endometriosis-c...

Good luck! 

[kelbel]

Good Morning,

I have just read your post and wanted to comment. Throughout all of my treatment and operations I have not been to a BSGE centre. I think as long as your consultant and surgeon are specialists in endo you should be fine!.. But do your home work, I googled my surgeon/consultant and my bowel surgeon to see how much endo experience they had. 

Maybe I have been lucky but the hospital and specialist I see has been brilliant, I have an endo nurse there to answer any of my worries or concerns and a bowel surgeon present at all of my surgeries.  I have stage 4 endo and am currently at home now recovering from a hysterectomy (I kept 1 ovary), I'm 8 weeks post op and feel great. 

It was an extremely hard decision to come to as I have no children (I'm 40), but I was diagnosed 4 years ago after having years of pain and bleeding and 3 miscarriages. I have had all the procedures going and treatments, but not one of them stopped me bleeding!!... I would bleed all the time, no let up, month after month. 

As hard a decision as this was, in my heart I know it was the right one, as you only get one crack at this life and I had spent nearly all of it so far depressed, crying, low, fed up, ( I could go on!....) 

My husband and I are now concentrating on my recovery and will then enjoy life!!!!

Good luck, I know it's not easy, it's scary , but if you ever need someone to vent or chat to please feel free to pm me.

All the best 

Kelly xx 

[Tboag in reply to kelbel]

Hi Kelly, if you have stage 4 endo and your general gyne has completed a thorough excision job along side your hysterectomy, then you are very lucky, and I hope your recovery goes smoothly, rest well, and don't go over doing it the minute you feel a little better, xxx 

Unfortunately, I had excision of endo and a hysterectomy last July, under a general gyne who said he was experienced in endo, I'm still in daily pain, not as bad, but badenough that it's still controlling my life, bsge centres have been set up for a reason, and the surgeons there have completed a further 2 year excision course, to learn where to look for endo, so many gynes miss endo in certain places, and concentrate on the reproductive system only, I be leave mine has been missed somewhere, and am now under a bsge centre, awaiting another laparoscopy to see what's going on, xxx

[kelbel in reply to Tboag]

Oh no!!... I am so sorry to read this Tboag! 😢 

I think I must be lucky then as my consultant is also my surgeon and has got 100% of my endo (apparently)... I guess time will tell!...

I had it over my bowel, bladder, uterus and  ovaries, I also had it in my Pouch of Douglas along with hydrosalpinx in my Fallopian tubes. My uterus was so swollen they had to go from laparoscopic surgery to cutting me open. I'm now sporting a 12" scar!

Again I'm so sorry to read your story and to hear that you are still in pain... 😔 I hope your future appointments help. 

Xx

[Insidemum in reply to kelbel]

Thank you for your reply Kelly.  It is good to hear you have been well looked after by a non-specialist centre and I hope your journey through recovery and beyond is a good one.  I had a quick look at the surgeon I am booked in with for June and they are not an endo specialist.  During my consultation there were a number of questions I asked which were brushed aside with vague or what I believe to be inaccurate answers which has set alarm bells ringing. My previous surgeon was at the same hospital but he does specialise in endo and I had a lot more confidence in him. I am going to get  a second opinion by paying for a private consultation at a BSGE centre this week hopefully (my Mum is lending me the money lol!) and then I'll be able to make a better informed decision. Thanks for the support. 

Lisa xx

[Hidden]

I wasn't given an option to use my right to an extended choice. I've been suffering with Endometriosis for 22 yrs now and my pelvis area is full of it and my fallopian tubes are completely blocked. This was noticed during my second laporoscopy at the age of 28 when I was told I would never be able to have children... this broke my heart but I accepted the fact even though it was extremely difficult. I'm now on Prostap injections and Tibolone tablets. Due to have my fourth injection next Tuesday.... the maximum I can have is six. My gyne consultant has put me down for an urgent hysterectomy you be done no later than June / July this year.... but the hospital admissions Dept have told me that I'll be very lucky if it happens before November. The only problem is once I've had the sixth injection and still no sign of an op date then I'll go back to square one and be in excruciating pain again.

We fly out to Miami on the 8th November and get married on the 10th....we then set sail in the 12th on a 14 Caribbean Honeymoon Cruise... There's no way we're cancelling the wedding.

I know my consultant also works at the local BMI private hospital.... I just wish I had been given an option.

I'm now at the end of my tether with this damn awful and dangerous disease. It's taken over my life and has affected my job 

😢😢😢

[Insidemum in reply to Hidden]

Dear marienemrova, sorry to hear you time schedules are not running to plan that's a nightmare! I have an acquaintance who is quite high up in the NHS. She told me if I chose a consultant who was at my local hospital but who also worked privately at our local Spire, that as the wait times were well over 19 weeks at the local hospital I was within my rights to use extended choice. I phoned my GP and said "I would like to be referred to consultant X at Spire X and use my right to extended choice."  My GP replied by asking if I wanted to go private to which I said No - NHS please. My GP was rather short with me on the phone but said she would sort and ended the conversation. I then had a call a couple of days later form the secretaries who clarified a few details (some hospitals have certain criteria - they had to check my BMI was under a certian threshold) they then proceeded to book me in there and then and I was seen within 2 weeks. That was 29th March and the consultant booked me in there and then for surgery on 16th June (they have to wait a certain amount of time before they can book NHS patients). No one I have spoken to is aware that we have extended choice - see if you can find out if your consultant sees NHS patients at the BMI centre and then request away. 

My naive mistake was not researching the consultant first, and not having had surgery for 10 years for the  endo I was not aware of the BSGE centres. I have been busy researching all week and am now going to get a second opinion asap. 

Let's hope they can get you sorted for your wedding. Xx

[Insidemum]

Thank you to everyone who replied to my first post. I have been beavering away doing more research to try and make a more informed decision. Xx