Endometriosis UK
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Endometriosis question

Hi

I got diagnosed with a bad case of endometriosis on the 19th of january 2016 and they started me on the treatment with the marina coil and the pill.

I am currently on my break for the pill and I am extrememly dizzy and feeling nausious. shaking and hot spells?

Anyone got any advice?

Thanks

12 Replies
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If this is the first time you've been on the pill it could be this. The first 3 months taake some getting used to, there are a lot of new things for your body to adjust to. When I first went on the pill my mood swings were awful, I felt really depressed, my head was constantly aching and I lost a lot of weight. There are lots of pills available. It may just be a case of finding the right one for you

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Hey hun I went hospital last night as nearly passed out and they said I can't have the treatment as I am a high risk factor for a stroke. The pills are risking the rest of my body xx

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Hi - what exactly do they mean by a bad case of endo (ie where was it found) and what did they do about it surgically? Where in the UK are you?

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I am in Devon. I ended up in hospital in April 2015 pregnant and I had a cyst on the right folopium tube which was making it irrupt. So I had to have a termination at 16 weeks pregnant and then surgery to take out the damped tube in June. Then in January 2016 they diagnosed me with a bad case of endo as it's grown from nothing to being really bad (as in the point where they were thinking about putting me through my menopause at 22 ) in just 9 months. As endo usually takes 11 years on average they were pretty shocked. I ended up in hospital last night and I am a high stroke factor so I can no longer have treatment. Xx

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Hi. Are they sure medicals are enough for a bad case of endo!?

I was diagnosed on endo several years ago, having some minor symptoms only. These were from time to time pains and painful intercourse. After some time my endo turned to be a bad case too. And everything ended in surgery.

Well, I'm not saying medicals aren't appropriate for you. All in all we're not experts here. But still if you feel that bad you must clarify what's wrong. Is this ok being the individual feature? How long will it take to bring you to a normal state? What if another option must be found for you? You should discuss all this with your endometriosis specialist. Do not keep silent as treatment not only plays on our side. Be careful and have another consultation as quick as possible.

Hugs, dear xx

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thankyou hun trust me im going to be asking an awful lot of questions i am not going to go through my menopause unless i absolutly have too.

thankyou hun xx

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Hi - it doesn't usually take 11 years for endo to grow, it usually takes that length of time to be taken notice of and diagnosed. It would be against regulations to put you on the menopause injections before age 23 as your bone density will still be building and these meds affect it. You can only take them for 6 months anyway which at your age is pointless and can only cause detrimental effects. What reason have they given against contraceptives - it is the combined pill that is associated with high blood pressure/ heart health and the progesterone ones would usually be considered OK. Did they find something else?

It would be useful to get a copy of the lap report to see what they found but in someone as young as you you need to see a proper specialist in the condition for thorough excision but it would then be important to control periods and hormone levels for which the mirena coil might be an option since little of the hormones get into the circulation. A centre would be best placed to advise on this.

Click on my name and have a look at my post on how to find a specialist centre.

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Thankyou hun, I have arranged an appointment with my speicalist on the 15th of March.

Going to be looking for lots of different options with this.

Unfortunaly last night when i ended up in hospital i was on the combined pill so the coil and the pill to stop and shrink the scar tissue (endo) but unfortiunatly they have had a bad effect on me and because of bad medical history the options where an operation or this treatment, now the treatment is ruled out because i was increasingly high risk of a stroke its just the surgery left biut the surgery was a no go when i had my appointment on the 19th jan 2016.

Thankyou anyways xx

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Hi - the critical point of all this is that if you have been diagnosed with what I assume is severe endo (though we really need to know what they found to know this) and you must NOT be operated on in the general gynaecology department of a general hospital. They have already proved themselves not to comply with regulations by suggesting the menopause injections at your age and if a general gynae operates on you they are likely to use inapproprite surgical techniques such as heat treatment that only treats the surface and can damage surrounding tisuues and are likely to miss deep disease. It is against NHS regulations for a general surgeon to operate on severe endo and I strongly advise that you get this right by getting a referral to a specialist centre.

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Ok Thank you very much. Well in October 2014 I had a miscarriage then in April 2015 I had a termination due to a fatal situation with a cyst and folopium tube. The folopium tube was taken out in June 2015 had a scan in December 2015 when they found the endo. That's all I know :( I will do that Thank you xx

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I should definitely get a copy of the surgical report from your GP to find out what was reported.

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Yes I am going to ring on Monday and get them to post it to me all of it.

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