Hi, I'm new on here and feeling very confused, I was wondering if anyone has had a similar experience to me and could give me any insight... I had a miscarriage about a year and a half ago following two unsuccessful rounds of IVF. Since then I've had an increase in pain and 'bowel problems' until it reached a peak last September and I was admitted to hospital, dehydrated and having lost nearly 3 stone in weight. After 6 months of gastro investigations, all of which were clear, by doctor finally did a CT and MRI and I've been diagnosed with Endometriosis, specifically bowel endometriosis. I saw a gynaecologist last week who was really unhelpful and just told me to take the pill, but this isn't really an option for us as what we want more than anything is to have a baby.
I've been looking at surgical options and we have an appointment to see a doctor who works at UCL to discuss this, but it's not until 30th March. I've found a doctor (who I think, having read some posts, some of you may have seen) who I can see at Harley Street next week and who operates up north near Leeds. He talks about this 'total excision' surgery and if I was to believe everything on his website he seems like a miracle worker. Has any one had this surgery? I feel really nervous of a long and potentially complicated surgery, particularly as I don't want any further damage to my fertility. My insurance doesn't cover this guy so it's a big decision. On the one hand I want the best and will pay if I need to, but I also feel a bit dubious about why no one else seems to be offering this surgery if it works so well?
Any thoughts/advice/stories you could share would be gratefully received as I'm feeling very confused at the moment!
Thanks
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Wheels_01
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Hello, I was just reading through tour post and wondered if you perused the doctor from Harley Street who also operates up north? I am interested as I am reading up as much information as possible. I have just had it identified that I have 2 sizeable cysts on my ovaries and also trying to conceive and would like the best possible chance of a baby but not let me endometrial cysts got the better of me. I appreciate if you have the website for the doctor? I am based in Leeds and everything specialist appears to be done south.
I believe the consultant Wheels_01is referring to has now retired.
However, you can look at the BSGE website for a list of accredited endometriosis centres and there does appear to be one in the Yorkshire (Wakefield) region: bsge.org.uk/centre/
I hope this helps.
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Just to second this - I can't recommend the importance of being with an accredited endometriosis centre enough. It will make a world of difference in terms of your treatment.
Excision surgery is the best; I have had lazer with general gynaecologist vs total excision with an endometriosis specialist and there is a world of a difference.
You can have it done on the NHS at an accredited endometriosis centre. Provision differs depending on where you are in the UK, here is the list and you can look up the doctors
Bear in mind that if there is bowel involvement it is important to have the surgery done within an NHS setting where there is an ICU and ability to call extra help if complications arise (otherwise they will have to close you up and will still charge you - happened to me). I think there are a few private hospitals in England with an ICU so check it out, the cost of surgery is between 3,500 for a diagnostic lap up to circa 6,000 for a major excision surgery.
What you could do is ask gp to refer you to specialist of your choice on NHS, then pay to see them privately for initial consultation (about 200 max) and they could then put you on NHS surgery list which ranges - about 6-8 months in England I think, 18 months in Northern Ireland.
It's so important to have things sorted out if the bowel is involved as it becomes progressively more difficult to deal with. Excision will get rid of all the endo and if your tubes and ovaries are all bound it can free them and put them back into the correct alignment to conceive. Please see the website endo-resolved.com which helped me a lot and can explain things in much more depth.
I was on waiting list for 3rd total excision for endo and concurrent adenomyosis and was told to get pregnant (aged 30 at the time) as high chance of hysterectomy; very stressful, we went on the list for ivf, I'd had excision about 18 months prior to all that, however also did a range of things that helped at least in that they kept us busy; will list in case any of them are at all helpful - came off all painkillers/drugs bar paracetamol, both of us on wellman/woman conception multivitamins, both gave up alcohol and changed to endo diet (endo resolved), lost 3 stone via weight watchers app, fertility acupuncture, bbt tracking (google babycentre uk bbt for chart and buy braun thermometer at boots circa tenner) - discovered I ovulated anything between 12-26 days so we changed when we were having sex.
I had 2 early miscarriages but then got pregnant with my son. Avoided surgery as endo had shrunk and symptoms improved post preg/breast feeding.
I've no idea whether all the surgeries I had or the lifestyle changes/stubborn persistence helped most, probably a combination, but we threw everything at it and the focus of doing so helped us to deal with what was a very stressful point in our lives.
Thanks so much for your really helpful and informative post I really appreciate it. I managed to organise a private consultation with a fertility / endo specialist which was worth the money x 100. His advice was quite similar to nhs consultation but was explained much better about how they would approach the survey for best outcome. Very reassuring. I have been taking usual folic acid and pre pregnancy supplements for 18 months but just started taking co Q10 and royal jelly last week. Also cut out alcohol and caffeine since October and cut down imon carbs (not eaten white carbs much for years) but finding it hard to cut down sugar. Is there a book you can recommend for endo diet at all pls? I know there is stuff online but I’d find it helpful to have a book. Sounds like you’ve really been through it so well done for being so resilient and glad you got a positive outcome. Thanks again for you help and support x
Book by Carolyn Levett at the bottom but there are others available - google on amazon. I never stuck to a rigid diet - just cut out eggs, dairy, red meat, alcohol, caffeine, sweet stuff, swapped white carbs for wholemeal.... allowed myself occasional indulgences (except for alcohol and caffeine). Really grew to love seafood.
It sounds like you are doing all the right things and have been through such a lot yourself. Def try the bbt tracking if you haven't previously (though I know you likely have if already been through ivf)
Thanks very much - book ordered 😃 we’ll be having first round of ivf in Feb/ March depending on outcome of surgery to remove cysts which is a week on Monday. I’m 38 and other half has some motility issues on his side so we’ve been told it would be likely option. We’ve been trying for year and half and just got discovered endometrial cysts in October.. Thanks for the tracking links - will take a look x
Oh my gosh that's so quick after surgery too, but I'm sure they have it all planned. As least you're quite far down the diagnosis/treatment path now and ready to take action. Yes def try the bbt, if we had gone with the 'aim for day 14' thing it would never have worked out for us. Maybe they have something more high tech to see when you're ovulating with ivf but it's at least a cheaper option and every bit of info helps. Good luck x
Yes I was surprised as I thought we’d need to wait 6 months after surgery. Because of my age, the consultant thought we should try stimulation after 2-3 months to see how I respond. I will try everything and trying to keep hopeful but my amh count was extremely low at 1.64 should be 5-15 and a private consultant I saw outside of nhs mentioned doner eggs would be a good option if I don’t respond well to stimulation. So fingers crossed and we will see. I guess like everyone on here we are trying to give ourselves the best possible chance 😊 thanks for the luck we will take it x
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