Daughters Diagnosis

Hi there I'm new here. I am a father I need to let off some steam and ask a few questions :-)

My daughter, who is 21, has finally been diagnosed with what we knew she had 6 years ago. Endometriosis. She's been diagnosed with so many things over the years, stomach migraines, IBS, kidney stones, possible ectopic pregnancy (even though she wasn't sexually active at the time) the list goes on and all the while we are wondering why they are avoiding Endometriosis. It's almost as though they hope it will just go away. Maybe in some extremely mild cases the patient is able to cope or the medical treatment actually works but my daughter was in agony most of the time and back and fore the hospital. Surely these cases must stand out to them, so why so long a wait for the Laparoscopy? All the time more damage is being done, more pills get taken. She even went on HRT for 6 months!!

It seems to me that Endometriosis is a dirty word. A frightening word from which Doctors like to run and fob patients off with ridiculous diagnosis. We don't even know what stage she has, only that it was too extensive to treat surgically. The doctor who treated her was great and everything but the truth would have been nice from the start. And here is the truth........

We think your daughter has Endometriosis so we will try some tablets, then when they don't work because we know they won't we will induce a menopause. This will work for the pain until we stop that treatment then everything will come back again. Then we will have a look inside and if there's only a tiny bit there we will remove it and if it's bad we won't because that surgery takes up to 8 hours and we can't do that for everyone. So worst comes to the worst your daughter will be popping pills for the foreseeable future with an ever decreasing chance of starting a family. All the best , see you in 6 months!!

Indignant as that may sound, it's what's happened. Anyone else experience this? I feel like I have to do something for her otherwise she's no better off than she was before the laparoscopy. To hear the doctor say she has Endometriosis was amazing after all this time and also good to know that there wasn't anything else more sinister going on, but I've been Googling the net for a long time about this subject for a specialist who performs a total pelvic peritoneal excision which apparently is very effective in the treatment of Endometriosis.

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  • My specialist only does work privately and his costs are quite high even with insurance. I have been to see him and have had a diagnostic lap and hysteroscopy as well. I went for a second opinion after I was diagnosed with endo which was removed by general gynae. It was only 2 months after the first lap and I was told by my specialist that I have endo on everything. I now have surgery booked in with him at the beginning of next year. He has 2 clinics, one in London and one in West Yorkshire but all procedures are carried out in West Yorks.

  • I am really sorry she's had such a horrible time but at least she now has a diagnosis. Do you know if she has been seen at a BSGE centre or in general gynae? If she's been treated by general gynae, it's worth her going back to the GP and asking to be referred to a BSGE centre (if she googles this, there is a list). These are NHS centres with specialist endometriosis clinics and perform excision of the endo tissue instead of just ablation/laser surgery which is what most general gynae are trained to carry out. They also have specialist pain clinics and are more knowledgeable about the various drug treatments.

    best of luck to her.

  • Check on Lindle posts here for referrals to BSGE centre. Your daughter's condition can be successfully treated by a specialist surgeon. I had excellent care in London by a specialist consultant. If you want to know details pm me. We are not suppose to name consultant or hospital here. Or the post may get removed.

    Best wishes

  • I think that she is very lucky to have you! Haven't got any advice except look for a bsge centre and demand, demand, demand! They won't give us anything unless we force them. Also, please recommend this forum to her, its the best place for moral support and understanding. Good luck to both of you x

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