Went back to c gynecological..

[kelseygrindley]

Hi. My 15year olddaughter went back to c gyne on Thursday and they r now saying there's no more they can do for her .She has had op . in may and took out small pieces of endo but she still tired and in pain every day . They put her on injection but this made her so bad angry and tearful. So she wouldn't take 2nd one . She has her gcses this year and she hasn't been going to school. . Do I get second apinion for her . Please help she is so low with this.x

[Hidden]

I too was told after my op everything had "gone" and I was merely having bad periods. After finding a very good female dr she explained this was not the case. Perhaps your daughter could try the pill? That can sometimes help, not sure if that has been suggested to you. I was told to wait a few months after my op to see if things settled down and if not i would be referred somewhere else...I am going back to the doctors Thursday to discuss. Keep pestering!! Good luck to your daughter.

[kelseygrindley in reply to Hidden]

Thank u for yr reply my daughter is on pill not helping. We are looking to go and get second option .

[Impatient]

There is nothing more that the gynae consultant can do - because they are only there for surgery - not the ongoing treatment options inbetween surgery.

Stopping her periods will help her a great deal.

Which injection was she given? Depo-Provera which lasts 3 months?

She is too young to be given GnRH hormone treatment, so I sincerely hope it wasn't that.

There are a number of options to try.

Norethisterone tablets are to be taken 3 times a day of 1 small pill, evenly spaced out - hopefully not leaving any more than 12 hours between any two of the tablets.

This drug can be taken to prevent the next period starting, and is a very handy one to use to avoid being on a period for exams and holidays and training courses etc.

The down side is when you re sick and vomit losing a tabet, or you have a runny tummy and the tablet doesn't stay in the body long enough to work, or you forget to take the tablets, or don't take a top up tablet after being unwell, it can trigger your period to start in a couple of days time. So it does take a religious commitment to be sure to take the tablets as prescribed.

Next up are the Combi and POP birth control pills which can also be used to stop periods for longer. taken 3-4 months back to back, you can reduce the number of periods in a year from 13 down to 3 or 4.

then we have arm implants - which last 3 years, called Nexplanon, they work over a several months to thin the lining of the womb and endo to the point where they should stop bleeds or get them down to barely spotting each month.

Skyla coil works in a similar way - lasts 3 years.

Mirena coil lasts 5 years and overall is the best of the bunch as it is the lowest dose and longest lasting period stopper.

Depo-provera are 3 monthly injections which also stop periods after a few months and should keep them stopped so long as she is remaining having the injections.

Then there are the GnRH chemo hormone treatments which are for those women who have completed their bone growth - so ideally shouldn't be used in women under 22 years of age and shouldn't apply to yoru daughter yet - but might be an option to use in the future at some point - but is limited to max 6 months in a lifetime because of the damage it cases to spine bones density amongst other side effects.

All of your daughters options regards her periods and trying to stop them are things you can discuss with her GP or the local family planning clinic. Yes they are all contraceptives too, but the reason we endo ladies are on them is primarily as period controllers.

Trying to find which option suits us each best, in terms of weighing up side effects versus the harm caused by continuing to have periods.

She should never give up trying different options, there are so many, and just because of a bad experience with 1 or even with 10 of them, doesn't mean there isn't something there which will work for her. Our bodies are changing over time, and what works well for a few years may become less effective in the future, and she may need to switch to something she previously tried that didn't suit her but later on may suit her very well.

Each option regardless of what it is, comes with some threat of side effects, they are not all going to happen, and the degree they are felt varies in each of us too, so she must not give up just because she didn't suit the 1st one.

I would recommend each option is give 3-4 months trial for the body to adjust to it and to have a better idea about what that option can do to improve her quality of life. There are no quick fixes, no magic bullets, it all takes a long time to figure out what is the right balance of hormone medication, diet, pain killers and so on.

She may need more surgery in the future - she probably will do, but try and cope for s long as possible inbetween having surgery, because each surgery brings its own risks of scarring and adhesions so you certainly don't want too many in a lifetime.

I would definitely try and get your daughter back to the GP and on to the next option she wants to try regards getting the periods reduced or preferably stopped.

Once stopped the mood swings and bad tempers stop too. They are caused by the fluctuations of hormones which ease off considerably once periods have been stopped. it does take time to get there though. Something which she and the family will have to endure I'm afraid to some extent.

[kelseygrindley in reply to Impatient]

Thank u for yr advice she is on the pill back to back we are on our fourth different pills now. She was put on the gnrh injections which we didn't want on as for her age but after surgery we got told this would help she had one dose and was bad on it so she decided not to have other 3 . We went back to go and get has given her name oxen 500 mg and amitriptyline as she don't sleep and very stressed. Thank u for replying .x

[givemeananswer]

Just sending hugs your way, let your daughter know she is not alone. Have her search instagram for fellow endometriosis sufferers and YouTube enthusiast' s. I find it gives me more strength knowing I'm not some oddity because the medical profession is stumped.

I would also encourage you to look into the foods that should be eliminated from her diet, it may sound like putting a bandaid on a gushing wound but there are some goods that can trigger pain.

May I ask is her pain isolated to any Ione particular area and is there any sign of the time of the month or is it all the time?

Keep a calandar and make notes of what she may have eaten that may have caused a flare. And to see for future reference if there is a pattern that makes prediction for planning a little easier. Time it against hertime of the monthher and when she is most likely ovulating, it may help the Dr.'s to prescribe a better pill for her patterns.

Sorry Mum it hurts to see our little ones suffer, and can hurt us too when the moods hit the roof. You also will benifit from knowing you are not alone too.

We are warriors and we need more hero's like you to help us in this struggle for greater exposure to encourage more research for a cure. We need the medical establishments to hear our cries for help, because we deserve a better quality of life with fewer side effects.

I'm hearing g a little Pat Benetar in my preaching right now haha

Take care,xxoo

givemeananswer