Really struggling - advice needed

[katiesineadx]

Hi everyone,

I have posted on here before but need help again. This might be a long post (sorry!) A bit of background, I am 17 and have been suffering from horrendous periods (very heavy and very painful) since I started them when I was 13. I went to the GP many times and was put on different types of the pill. I can't take the combined pill because for some reason the oestrogen makes me sick, so I was on different types of the mini-pill. It helped for a while but recently hasn't helped whatsoever and was making me bleed constantly, so I came off it.

After going back to my GP yet again, I had researched my symptoms online and found this page about endometriosis. I had also found information about other conditions such as polycystic ovaries, but my symptoms related to endometriosis more. When I went to my GP, I told him about my symptoms and also mentioned endometriosis and polycystic ovaries. I have also been having trouble with my bladder and mentioned that also. At first the GP seemed interested, until I saw him scrolling through my medical notes and I am assuming he saw I have suffered with anxiety and depression. My mum who is a nurse was also there and noticed this too, since the GP's attitude changed when he had finished scrolling. He basically said it couldn't be endometriosis because of my age, and didn't want to refer me to the hospital for the period problems or the bladder problems incase it 'fuels my anxiety'.

Although I did suffer from anxiety for a while, and still am mildly, I have never really worried about my health until recently when it has really started to impact on my day-to-day life.

He eventually referred me to the hospital, but to the urology department. There, I mentioned my periods and was referred for an ultrasound to see if they could find any cysts. The ultrasound showed nothing apart from a reverted uterus and a thickened womb lining. I am due to go back to the urology department in April for a follow-up. I am very reluctant to go back to the GP as I feel they brush me off due to my age and don't really listen, the GP last time also commented it was 'abnormal' for somebody my age to be researching my symptoms.

However, I am struggling a lot now with everyday life. I am a college student 3 days a week and also do a work placement at a primary school 2 days a week. I have been having really intense abdominal and back pain even when I'm not on my periods. When I am on my periods, I feel like paracetamol/ibuprofen isn't really getting to the pain. The other day the pain in my back was so bad I couldn't walk that far and struggled getting up out of bed.

Due to this I have missed days of both college and work placement, and I am terrified I will get kicked off them. I don't know how to tell them what is wrong with me since I haven't been diagnosed with anything yet, I don't even know if it is endometriosis, it is just what I relate with the most and don't know where else to ask for help.

Does anybody have any tips for coping with school/work and this? I am worried that the primary school and my college are fed up of me not going, and I don't know how to tell them what is wrong.

Sorry for the rambling, I am going to mention my symptoms again on my follow-up and hopefully I will be referred to the correct department then so they can find out what's up with me, but until then, any advice is appreciated!

Thank you x

[Jlt2g09]

It's really hard tbh to even get diagnosed I was the same but got referred to Gastro and they told me my pain was all in my head and until last year I only got diagnosed I am now 24! I changed GP Numerous times until I was listened to! Maybe you need to go and see someone who specialises in Gyne at your GP SURGERY or change you GP a lot is being put into getting practices training on Endo at the moment to help shorten the diagnosis times! But until you have been seen by Gyne and had a diagnostic lap you will never know for sure! Keep going you are doing the right thing! Hope it all works out soon for you x

[Lucy26]

Ah I feel so sorry for you, It sounds like endometriosis, perhaps you could see a female doctors next time and ask for a referral to the gynaecologist and then get a laparoscopy as that's the only way to see if you have endometriosis and if it is they will remove what they can at the time of laparoscopy, Follow your instinct and don't give up - if this is endo it could forever untreated. Best of luck x x x

[Jenf260 in reply to Lucy26]

The females are the worst they refused to do my surgery i had to suffer for another year and then i got a male who was in charge of the whole department and went their your doll for a short cut as to why she wouldn't give me surgery, it was also female gp's i saw over my 10 year struggle and they all fobbed me out the door, you need to see a male.

[GrittyReads]

So sorry you are going through this. I had thought things were better for young women than in my day - but obviously not.

Perhaps there is the vague chance that there is a women and/or nicer GP at the practice that you have not tried yet, but if you don't get any more practical and concrete suggestions on here, I suggest you contact 'Endometriosis UK' [there is a link at the top of the page] and see if you can talk to their advisors.

Also, if you search back through the comments on here, I'm sure someone posted a link to an online listing of Endometriosis Centres - maybe if there was one near you, you could phone up and see if there's any chance of self-referring.

Do any of the hospitals near you run 'Well Women' days, or courses, or advice centres? I know the little hospital near me - that would have been a 'cottage hospital' I guess, at one time - has a Women's Clinic, that I can refer myself to: they did the routine check, a few weeks after I'd had a mirena coil inserted: my GP' s surgery told me to phone them and arrange it myself.

Finally, maybe there's even a 'Well Woman' clinic, somewhere near you, or even a 'Family Planning Clinic' ... anywhere you could self-refer and get a more sympathetic hearing and hopefully some advice on how to pursue this. Try phoning a Women's Centre for advice, if you have one, they should know of such centres.

A week or so ago, someone on here was advising someone to buy the book 'Endometriosis for Dummies' as this covers almost everything, and it clearly covered many of the 'faux pas' issues that GPs often make: eg makes it clear that 'a lap is needed to detect endo, and that an ultrasound is not enough'; or: that 'endo will grow back after a laser removal, and the lap and removal will need repeating'; or 'endo can continue after: hysterectomy/menopause/ etc, etc' .. so it debinks lots of the things that Drs get wrong, and may well say something about women your age having endo, if all else fails you could highlight it and show it to your GP.

I do hope you get some help and support soon, I wish I could suggest more that's useful.

[sar71]

Sorry to hear you are suffering so much it's very frustrating when they don't listen I have suffered since 10 with periods ( now 23) it took them til 16 see endometriosis was issue have had 2 laps since then and needing another currently but no-one listening again. I have had every test possible I know the symptoms and how I feel when I have endometriosis back but it's like talking to a wall. Just don't give up I've being battling this for 2 and half years now I would definitely go to female cause she might understand more then a male if you explain exactly what you feel and go through. I know college is a hard one I had to drop out after awhile it became to much and was hoping go back but I still not sorted so can't yet. It really affects every area of your life but keep fighting them till they give a diagnoses it's the only way to know. Hope you get sorted soon x

[Brownlow]

Here's the link to endo centres that GrittyReads mentioned bsge.org.uk/ec-BSGE-accredi... As suggested by Grittyreads you could ring your nearest centre and pay to see the endo specialist privately initially at least to get the ball rolling before switching back to the nhs depending on the outcome. It's disgraceful that you should even have to think about doing this but sometimes we need to take matters into our own hands.

Endometriosis is most certainly possible in adolescents.

This is Endometriosis UK's youth ambassador diagnosed at the age of 14 endometriosis-uk.org/al... Look at the whole website for more info and there is also a helpline that might be worth calling.

This paper was just published in December 2014 scielo.br/scielo.php?script...

I have also read of a case where endometriosis was found in an unborn baby and there are a few documented cases of men with endometriosis.

Your GP appears to have made a ridiculous link with your past history of anxiety and your research of your symptoms. I think he has jumped to a facile conclusion that you are being neurotic. Personally I would not wish to be in the 'care' of such an individual and I suggest that you change your GP. Your current GP will only increase your anxiety!

Well done to you for researching your symptoms. You sound intelligent and proactive and certainly not abnormal. Have faith in yourself. x

[GabrielleG]

Hi there, it sounds as if you are having an awful time of it. I posted on here a couple of weeks ago as my 13 year old daughter is suffering too. I received numerous really helpful replies and here is an extract from one of them which I have chosen because there are lots of links that you might find helpful - especially the one that enables you to find an endo specialist consultant near you - you don't just want a gynae, they need to be an endo specialist to take someone of your age seriously. We are keeping a daily diary of symptoms which I printed off the Endo website - look at the link and also bought the book Endo for Dummies and once I have sufficient data we will be requesting a follow up appointment with an endo specialist

As an NHS patient you HAVE THE RIGHT to see another GP and to be taken seriously for this issue as it is affecting your work as well as your general life. If you have no joy at your own surgery, you might have to change surgery - easier said than done I know but you may have no choice.

With regard to work and college, I would be upfront with them and tell them you are struggling to get a diagnosis - we have to stop being embarrassed about these issues as the one thing I have learnt from this forum is how many women are suffering in too much silence.

Here is an extract from the post:

Go to the Endometriosis UK website for plenty of info. Here's the page on bowel endo endometriosis-uk.org/en... Scroll down to the pdf for more info. She might not actually have endo on her bowel but the presence of endo in the pelvis can upset the bowels.

If you think that all the evidence points to endo then put your case together with the symptom diary and printouts from the endo uk website and demand referral to an endo specialist. You have the right to choose your specialist and here is the list bsge.org.uk/ec-BSGE-accredi... Do you recall any endo type symptoms or perhaps any other female relatives?

Please read Lindle's excellent post healthunlocked.com/endometr... and print out from the various links in case the GP is reluctant to listen.

You might also come up against this old chestnut "she's too young to have endo". This is Endometriosis UK's youth ambassador diagnosed at 14 endometriosis-uk.org/alices...

Good Luck!

[Brownlow in reply to GabrielleG]

Here is the link to Lindle's post which didn't copy through properly healthunlocked.com/endometr......

[Jenf260]

Hi your symptoms are exactly the same as mine and the same thing happened me with the bc pills in fact after 10 long years i was the same age as you when i started having problems and last year finally found a fab Gp who told me at my first appointment it was defo endo i have referred me and i am now getting my first lap and excision at the end of April but because i have been untreated for so long i am now 27 years old i am now infertile and have been warned to stay off birth control pills because they have done more harm than good and if i was to continue taking them i would take a stroke. I have a video on youtube you may find helpful as i use herbal remedies for pain relief i have found them to be more effective and safer than prescribed meds. Try drinking Heath and Heather's RASPBERRY LEAF TEA when you find your stomach or back pain coming on within an hour my pain has subsided it may or may not work for you as everyone is different but it is worth a try.

Also change GP'S and keep at the doctor and hospital until they agree to check you out for Endometriosis. Do not let them fob you off and suffer the way i did.

For your back pain rub some Geranium essential oil on you may dilute it with a carrier oil such as almond of vegetable first if you wish if your skin is sensitive, i just apply mine neat and it absorbs into the skin and helps reduce pain and inflammation.

I am also on Facebook should you wish to discuss any of this further.

Take care god bless and i will be praying for you xxx