Double the pill

I recently had an appointment with gyno after my doctors no longer knew what to do with me after changing my pill multiple times and pain medication that didn't touch the pain. She was really unhelpful and pretty much called me a liar and looked at me as if I was over exaggerating everything. Anyway, I'm now on double cerezatte and if that doesn't work it's the injections next and after that the marina coil. When I asked about explorative surgery (what my previous doctor had recommended I bought up) she absolutely refused. I told her about other women in my family who have endo and had to have hysterectomies by 25 and she said we weren't there to talk about that ... I understand any way around surgery is good, I just feel a bit passed on. It's also kind of scary being 19 and having about just under a year of trial and error (3 month trial time for each thing). Don't feel like another doctor would look until I've done what the gyno recommended. Anybody have any similar experiences? What did you do?

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  • Hi - I'm so sorry about how you are being treated and that you have had no replies to the two posts you have put on. I used to help on here all the time but have my own FB support group now so don't have much chance.

    You don't say what your symptoms are but you are clearly in severe pain and what you are experiencing is clearly not normal. Having endo in the family puts you at much higher risk of having it than the general population.

    Assuming you are in the UK there is a very clear pathway to be followed for 'suspected' endo which is to offer 3 - 6 months of contraceptives then refer you for a lap. But you don't have to take these medications it is your choice if you want a lap - as long as endo is suspected. But you have had what sounds like endless contraceptives already and it is well documented that this postponing of thorough investigations is likely to result in severe endo turning up down the line. It sounds to me that she is refusing to accept that you might have it in which case she would have to be prepared to state categorically on your medical record that you don't have it - otherwise your symptoms are almost certainly going to suggest that you might have it unless/until proved otherwise. Any GP would be extremely stupid if they were prepared to put that on your records.

    In your previous post you were hoping to get a referral for a lap so I assume they have done a u-turn and now refused it. I have letter templates on my FB group that we can use to write a letter to your GP to get you to proper care. This is always effective and better still provides an opportunity for you to record all your symptoms in a permanent way.

    If you would like to join we can go from there. x

    facebook.com/groups/1148144...

  • Thank you for the link to your group!

    My symptoms would be the unbearable pain and nausea whilst on my period, the occasional pain and nausea off my period and pain during sex (not all the time), tiredness (I don't know if that's because of the pain relief) and a pain in my lower back and thighs to almost numbness during my period.

    I've been on contraceptives since I was 15/16 due to heavy and painful bleeds and they've been changed multiple times.

    At the hospital she exact words where 'we're not here to talk about that' when told about family hysterectomies and sex life.

    I've just been made to feel like my case isn't important enough to go to a specialist or challenge the gyno. I feel like I've made a big deal out of something that others are saying is probably nothing.

    Thank you for replying and letting me feel like a person who does have a problem that needs to be fixed and isn't just attention seeking! Even if some of the info is a bit too much! X

  • You are entitled to a second opinion and with your family history it's worth getting to see a BSGE endo specialist bsge.org.uk/centre/

    The trouble with operative surgery too young I understand is it can actually make the condition worse through scarring and adhesions, so that may be the reason for her reluctance. I'd be surprised if the pill works if it hasn't to date but I'd do some research on the other hormonal treatments initially and form your own view. This is a good overview and where I did my initial research. endometriosis.org/treatments/

  • Thank you for the links! I'm trying to get as much information as I can. To be honest I don't know if it is endo, it would just be nice to be taken seriously. The way I've been treated so far makes me feel like I don't have enough of a case to see a specialist.

  • Hi, your journey seems kind of similar to mine...my doctors tool about 4 months to refer me to a gyno and I kept going back as I was in so much pain and they kept saying it was a UTI infection and giving me the wrong meds etc and I knew it wasn't anything like that and that this was something alot complex! but they kept turning me away until eventually my own GP saw me and referred me to the hospital for scans etc and came back that I had 2 cysts and then diagnosed with endometriosis and it's been the worst experience ever! my gyno put me on a 3 month trial of the microgynon 30 pill taking it back to back so no periods as I was in extreme amounts of pain when I was on my period but theven pill has help the endometriosis symptoms.. i do get a bit of spotting so im also takinv tranexamic acid tablets to help with that so talk to your gyno or doctor about those..also I take 1000mg evening primrose oil and cod liver oil has helped me loads.

    I hope you get something sorted hun..I really feel for you and it's so horrible isn't it! but it's nice to know I'm not the only one out there suffering and people with similar situations and joining this forum has openned my eyes to it alot.

    Xx

  • I've tried microgynon, but I have a family history of migraines and it made me really nauseous so I can't have it :( I've had menafamic (sp?) acid and it didn't do much of anything?

    Taken my doctors 18 months to refer me, telling my its my lack of pain tolerance but I think it's more than that. It's good to know you got the help you needed and finally have a diagnosis! I've had an unltrasound and an internal where they found a cyst but not one that would cause me so much pain.

    The cod liver be primrose oil sounds interesting, what does that do? :) x

  • Aww yeah best to stay away from that then! I'm suffering with thrush atm and think that's due to the microgynon and going to see what other options there are when I see my gyno next week.

    That's good that you've had the scan and they found something...that's a positive! they should deffo do something about it now and keep pushing for treatment with a specialist! It shouldnt matter on the size of a cyst, if you'require in pain you cant live like that..fingers crossed for you!

    The primrose oil helps with endometriosis and helps ease symptoms...it takes a couple weeks to get into your system but it may be worth trying...you can pick a pot of 30 capsules up from any supermarket for like £2, it's nothing really and the cod liver oil I've been told is good for it too and that costshe the same price...deffo worth a try! 😊 xx

  • Your symptoms are absolutely text book for someone who has had years of contraceptives whilst endo progresses. No amount of medical treatments will have any effect now if you have deep disease (that gives all these symptoms) as they are only effective for early stages. It is vital that you are investigated to see what is involved. The longer it is left the more complex the surgery will be.

  • Good luck, prepare your request and justification in advance and don't be fobbed off. It took me 30 years to get diagnosed but things are improving especially with the amazing work Lindle has done.

  • Dear SRFallen

    Sorry to hear of your struggle. Have you seen our page on getting a diagnosis?

    endometriosis-uk.org/gettin...

    Hope this helps.

    Endometriosis UK

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