Endometriosis UK
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Follow up gynae appointment - Help

Hi everyone. Sorry this is a long post!!

So I went for gynaecology app yesterday. They were 1.5 hours late seeing me to start with then they were closing so they didn't seem interested at all!!

I was told last time to get mirena and wait 6 months for another app. I was hoping this app would help a bit as I had coil fitted and still in pain. This time the gynae said I should take methadamic acid and wait another 3 months to be referred for lap!! My husband was with me and naturally he got annoyed (he has seen me in sooo much pain, up a&e and just wants to help me). I also got really upset as I can't stop crying at the moment and I couldn't believe I have waited 6 months to now be told to wait again. If I take the methadamic acid and feel better will they still refer me for lap (I don't like taking medication unless I really have to and don't want to be on this forever)

The gynae said it may just be ibs and that if I have the op it's still "surgery" and can have problems ect. She said the coil will settle soon(I have had it for 4 months and just seem to have more symptoms and worse pain!!). She said the coil will "kill" the endo over time and I would feel better. I know this is rubbish but I just felt so emotional yesterday and couldn't be bothered to argue. I was sent away without being scanned or checked at all (I was last scanned last July!!) they couldn't even make me another app as the receptionist had gone home (they are meant to send me app in post!!)

I don't know what to do I keep feeling really down and feel like it's all in my head. No doctors seem to care and just keep telling me to wait. The gynae knows I'm nervous about lap so I think she just trying to put me off

I just want to know what's wrong with me so I can feel better and "normal" again


3 Replies

Hi - in many ways it is a good thing that this gynaecologist hasn't attempted to operate on you as she is clearly so uninformed about endo that the chances are that she would probably miss it, tell you that you don't have endo and then condemn you to years of worsening disease without treatment. A gynaecologist who thinks the mirena coil kills endo shouldn't be practicing. The mirena is essentially to help control the flow of blood at a period as it influences hormones and thus help period pain. It works locally on the uterus lining and very little gets into the main blood supply to influence endo. Mefenamic acid blocks some of the chemicals that cause inflammation so reduces blood loss and theoretically could reduce endo pain. But interestingly the NHS guidelines on this first say it is used for rheumatoid arthritis then go on to say that it should not be used in people with autoimmune disease - and rheumatoid arthritis and endo are both autoimmune diseases!!

The upshot is that this woman is working completely against protocol. For her to mention endo it is clearly suspected that you have it so she should be following the NHS protocol that requires a referral for a lap if hormone meds don't treat your pain within 3 to 6 months. You have already exceeded this. You should now request referral to a specialist endo centre for proper treatment. Please can you click on my name and have a look at my post on how to find a specialist and be sure to read all the links. You might also be interested in the one on rectovaginal endo in case you have symptoms of that. Where in the UK are you? xx

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Hi lindle. Thanks for your reply. I have been so emotional lately (I think due to the coil) and it just feels like I'm going mad!! I'm just fed up with being told to wait and see and no answers

I live in brighton and I have been told there is a good gynae I can see here I'm just doubtful I will see him. I'm also really worried about having a lap and only really want one if I need to



Hi - unfortunately there is no way of knowing if you need a lap until you have one. Long term hormone medications are only effective in the mildest of endo but there is no way of knowing if you are such a case. Otherwise such meds can only make any endo much worse by allowing it to progress whilst symptoms are suppressed. If you don't want a lap then really you are choosing to take meds instead, which as you have experienced have their own problems in terms of side effects.

What are you afraid of? Laps done by skilled specialists are routine operations. Endo UK supports the BSGE centres so I think that anyone on here will advise you to have a lap to find out once and for all if you have endo so you can have it excised.

If you do decide to see a specialist make sure it is in an accredited centre or check that the surgeon is a member of the endoscopy societies and has had extensive training and experience of advanced laparoscopic excision of endo. You should then have nothing to worry about. Sometimes we have to ultimately do what is best for our health and take charge ourselves.

You have such a centre in Brighton. It is awaiting accreditation by the BSGE but is headed by a very high profile surgeon - look on the list of provisional centres under the 'endometriosis centres' tab on their website. I cannot comment on their skill but you could look into that. x

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