17 and struggling

[chlo11]

New to this, had a lab just to look around 4th July, found mild patches of endo on my uterus. Still in terrible pain and feeling sick most days. Only just turned 17 in August and finding it really hard to cope with the physical effects but also feeling very down and lacking energy, not sure what I can do to feel positive:/

[Impatient]

Did the surgeons remove the mild patches that they found?

What have you done since the op in terms of stopping periods to try and reduce the chances of new endo appearing? Are you on mirena coil or any birth control drugs to stop the periods or reduce the number that you have in a year?

If they did not remove the endo found then you need to get back on to the surgeon and find out when they plan to do a follow up surgery with a more experienced surgeon who will remove the existing endo. It does you no good at all to leave it there.

You should also be taking steps to manage your periods- once endo is found.

There are loads of options to try out and they wont all suit everyone - bit of trial and error to find one that suits you and your lifestyle.

Norethisterone is the most flexible because you can delay a period or time it to arrive within a few days. It is a faff though. 3 tablets each day evenly spaced out with no more than 12 hours gap between tablets or you can trigger a period to start in a couple of days.

Very useful though for not having a period when on holiday or during exams or you hve a big family event you don't want to ruin by being in agony and bleeding.

Next are birth control pills. two types.Combi which does contain oestrogen and is milder side effects wise - but not ideal because endo feeds on oestrogen so your goal is to try and cut down oestrogen.

And POP or progesterone only pills. much better for endo - but some ladies do get odd side effects that they don't like.

Then there are arm implants which last up to 3 years - no tablets to take.

Then the IUD coils that are placed in the uterus and are best put in when you have a surgery on existing endo s it can be painful to get put in if you are not knocked out cold with a general anaesthetic.

Skyla lasts 3 years and is smaller version of Mirena Coil which lasts 5 years.

Mirena is the best value - because it is only 20% of the hormones used in the pills, and is the longest lasting of the period stoppers.

It is a life transforming gadget, at least I found it to be.

The arm implants or coils do not work immediately like norethisterone, they behave differently by gradually thining the menstrual lining over a few periods then there is little or no lining growing so you stop having periods till the device is removed should you want to try for a pregnancy or you do experience side effects you cannot cope with.

There is another option which are injections every 3 months to stop periods - this is called Depo-Provera. It is very heavy on the hormones, but it is ideal if you hte taking tablets or are not good at remembering to take them. You can get the same drug in tablet form at a much lower dose and that is just called Provera. it is a POP pill among many POP pill options.

I suspect you will feel a great deal more positive when something is actually being done to address the pain properly and stop your periods so you can get back to a decent quality of daily life. It's very depressing to be struggling with periods, pains and feeling abandoned and given any guidance on what to do or where to go next.

If your Surgeon is not willing to do the follow up op, have a look at the BSGE website, select your nearest endo centre and take the details to your GP and demand a referal to the endo centre.

You're entitled to have a consultation with them and seek a second opinion if you need one. Waiting lists can be longer than for regular gynaecologists but worth waiting for as they will know what they are doing and will remove all existing endo which should help you a great deal.

The tiredness factor has no known cure. Fatigue is part and parcel of having endo and we have to adjust our work life and social life to take that in to consideration. That's the best you can do to ration your energy levels. Make time for rest and sleep after major exertions.

Don't book anything demanding for the day before school or work. Recharge your batteries at every available opportunity.

Never ever give up trying new things, pushing for the next treatment if it is a surgery or some other thing you want to try to see if it helps. you know something is wrong and sadly for all of us it can take a lot of effort to persuade Doctors to give us the treatments and surgery we need, and a lot of waiting around for appointments because waiting lists are so long.

I wish you every success in getting this sorted out properly. It can be done - you can improve things a lot, just have to fight fight fight for the work to be done.

[chlo11 in reply to Impatient]

Thank you for the advice, they did remove the various patches of endo using electrical currents however I ended up staying in for a week due to complications.

I'm sleeping as much as I can between college and working but still find myself overwhelmed with tiredness and it's causing problems with how I preform at work and college.

I have also recently had awful stabbing pains in my left side (where they found the endo) however the doctor said all I can do is take codine to counter the pain.

[Hidden]

Hello there. I'm going to agree with Impatient and say get back to your consultant or at the least your GP and see what else they plan to so. Just having a plan will make your mood lift a little.

There are so many options and you need to talk them through with a professional and work out which is right for you. It might be trial and error to get it right but doing something is better than just hoping things will change.

Good luck x