Help?

Hi Everyone

I have an appointment with my gynaecologist this evening and in my head i feel its doomsday. I am on the mini pill at the moment. I feel its not working. My next option is Zoladex but i really don't want to go on that. But i don't know if there are any options after that other than a hysterectomy? Im terrified as thought of hysterectomy at 24 is just beyond scary as all i want in life is to start my own amazing family. If anyone knows of any suggestions please let me know xx

13 Replies

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  • Hi - did you do anything about getting a referral to a BSGE centre? You have been told you have severe endo and the pill, zoladex and a hysterectomy will not cure it. You have only had ablation and that will not have removed it. You need thorough excision by a specialist in the condition who has done advanced training in the surgical skills needed and we have established that your consultant is not such a surgeon. Go back to our messages and follow the guidance to get a referral to a BSGE centre. Your consultant is following the wrong course and ignoring NHS recommendations.

  • He is an Endometriosis specialist. He is saying as my pain is so severe and bleeding has stopped for a month now that its something completely different and not gynologically related. Which he said worries him. He is setting me up an appointment with a pain specialist between now and 4 months when i see my gynae again so hopefully will have help with that. But he said that i may never ever find out what it is. Ugh! Drained and lost now Lindle x

  • If it is still Mr M F you are seeing then he is NOT an endo specialist. I have looked at several profiles and endo is not even mentioned. He is a general gynaecologist. There is an absolute massive difference between general gynaecologists - who would describe themselves as 'specialists' in general gynaecology that includes a very basic knowledge of endo - and a real specialist in the condition who has done intensive advanced excision surgery and does the most complex endo surgery that takes years of experience to be qualified to do. Such specialists are only in the endo centres and you won't see your specialist named in the list of centres:

    bsge.org.uk/ec-BSGE-accredi...

    You have previously confirmed that you have had two previous laps that confirmed severe endo and you had it 'burned' and it has kept coming back with a vengeance. This will have only touched the surface as a general gynaecologist often doesn't even seen most of the endo in severe cases as it is typically well hidden and can't always be accessed at a lap anyway. The very first thing you need is an MRI but I don't think you've had one.

    It is vital that you are referred to a centre as things can only get worse and you are so young. It is young women like you that the centres were set up to avoid inappropriate care in general gynaecology. I'm not sure what more I can do other than ask you to go through our messages again that we exchanged 3 months ago and follow the script I wrote for you to go through with your GP to ask for a referral. You are being treated completely inappropriate and really must exercise your rights to be seen in a centre. We are very fortunate in England to be able to assert these rights. x

  • I have had MRI scans before yeah. He has operated and excised my endo just over a year ago. He now says my endo is mild (confused). I will re-read messages x

  • Hi - in a comment in the post that had lots of replies you mentioned you had two laps last year and had the endo burnt once. Even if he does do excision he is not qualified to deal with severe endo without advanced training. The reports from the laps would be helpful - where was endo found and did the MRI show anything?

  • He is also now saying it was mild endo. So what if hes now right and not endo i cant go to bsge centre? X

  • Hi - it sounds to me that he is making things up as he goes along. We know you have endo because he has burned it off and you can go to any endo centre with any stage in England. But you need to get the reports from the op to see just exactly what was reported and from the MRI. So get these from your GP practice. There will be a small charge but not much. Ring reception and tell them you want copies of the operative report from your lap and the report of the MRI. Have the dates to refer to. You don't have to give a reason - it is your right under the Access to Records Act - but if they do ask you might just say you are trying to make sense of your medical condition and leave it at that. Ask what they need from you. You might have to put it in writing. Off the top of my head I think they have to get them to you within 40 days of the application but hopefully they would do it in less. You can also go in and view your records for free to identify what you want. Either way we really do need copies of these records now he is playing silly beggars.

    When you have them send me a private message and we'll get a letter written to your GP to get you a referral to a centre. And please, please don't let yourself loose confidence in their being anything wrong. Your own instincts are always the best indicator that there is and you are so typical of a young woman with endo who has been fobbed off by a gynaecologist who we have already proved from his profile has no special interest in endo. You have to get the ball rolling now and we will guide you all the way to proper treatment. x

  • Ok Thankyou Lindle again! To be honest i am losing faith and confidence as its gone on for 10 years now!! Will ask for copy of my notes for sure. Thankyou again xx

  • Hi FeliciaRose, have you had a lap yet? The best option to treat endo is laparoscopic excision to remove the endometriosis. Hormonal treatments will help with the symptoms but will not cure endo or stop its progress. Is your gynae a specialist in endo?

    Hysterectomy will not cure endo so it is not a viable option. Also, don't be too scared of zoladex. I was petrified of taking it because of all the horror stories that I have read but my experience with it was not bad at all. That said, zoladex is not a a long term treatment so it might not be the best option for you right now. X

  • Yes have had 2 laps last year. Oh so confused now as gynae is saying now my pain I'm experiencing is not endo maybe not gynae related at all x

  • The NHS guidelines are that zoladex must not be given under 23 years of age because maximum bone density has not yet been reached but many sources suggest that an age of 30 is more appropriate (if it is appropriate at all). The NHS contract for severe endo confirms that hormonal medications are not appropriate for severe disease and that excision is the only appropriate treatment. For someone so young zoladex could only give temporary relief at best at the cost of potential severe side effects. It has to be questioned what possible rationale there could be for such a young woman to take zoladex in favour of excision.

  • Please listen to Lindle and get referred to a specialist, I've had a lap, with removal of endo and a hysterectomy for adenomyosis, now whilst that was nessesary for the adeno, it has not helped with my endo, I'm due another lap now with a specialist to look for remaining endo, and in the mean time in on zolodez 1 for the pain and 2 to see if it's worth having my overies out, please see a bsge specialist xxx

  • I've just got back and apparently it might not be endo it might be something completely different that will never be found out. I amm so confused and lost. Can't stop crying and don't know what to do. My gynae said to carry on with the Cerelle for another 4 months and see if it's endo related or something undiagnosable :(

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