Endometriosis UK
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Worried 17 year old girl

I'm Demi, only 17 years old and extremely worried about my symptoms. 5 months ago I got diagnosed with chlamydia and pelvic inflammatory disease (pid). I was put in a course of pills and had an injection in my hip to sure this and 2 months later I went back to find out the treatment had worked; but the reason for me to go to the doctors in the first place is because for about a year, since I was around 15 I have been experiencing excruciating pains particularly in my clitoris. The pains are full and uncomfortable and come unexpectedly. Once I was on a bus and I burst into tears because the pain is so strong and uncomfortable I just want to lie down. It's a dull pain but at times when I go to the loo it hurts and stings to wee. I also find my wee smells very strong ( not fishy). I have had 2 internal scans and 2 ultrasounds and the doctors have found nothing. I have mentioned endometriosis to the doctors several times as my mum had it at 17 and had a laparoscopy 2 times! But they seem to not care and ignore me because I'm so young. I'm also worried because I'd like to have kids in the future and don't want to end up infertile. They have put me on various contraceptive pills but nothing helps the pain. Recently after taking pills 'qlaria' I have been on my period 3 weeks straight, heavy the whole way through and with period pains every single day up until today whilst being on these pills (which I have taken every day without fail) today I am quite light but my blood appears very dark and thick and the pains are very painfull. I can't go on this way. Any help anyone please. Please share any experiences you have had similar to mine or any advice you may have. I am currently on a waiting list to see a gynecologist but it's to painfull to wait. Sorry about all the detail



1 Reply

I am rather doubtful that your symptoms are endo from what you have written. Only lap operation would clarify that for certain, but you do have more than one thing wrong here though, so I shall run through a few possibilities.

Obviously you do need to see a gynecologist regards the clitoral pains,

because something is causing that, however it is not the usual location for endo, and you would have a pretty good idea if it was endo there, because endo are the same cells as inside the womb and would bleed with each period as they are surface growing cells. They can grow on skin, but that would be very obvious.

but regarding your bladder and wee that smells... if you're sure that is not caused by your medication or diet (many foods cause smelly wee) then take a mid stream sample (pee a bit in the loo, catch the next bit in a sterile container, then pee the rest in the loo) Try and get this from your 1st pee in the morning. Put the sample you collected into a urine sample pot which you can get for free from hospitals, NHS drop in centres and from GP surgeries, you don't need an appointment just go up to the counter and ask for a couple. Keep one in reserve for a follow up check if needs be.

Take your sample to your GP and ask for it to be sent to the lab for testing for infections.

Your GP can test dip a strip which will show if there is infection but not wht hs caused it or what it is reactive to, so it does need to be sent off for analysing too.

Not all UTI causes burning when you pee, sometimes the only clues to urinary tract infection are change in smell or perhaps changes to the frequency you go pee. It can take several sessions of different antibiotics to zap UTIs because so many are now drug resistant to a lot of the antibiotics that used to work on them.

My last infection took 3 different antibiotics, so after you have finished one lot, be sure to go back to the GP if you don't feel that your are completely peeing normally again.

If after treatment to eradicate UTIs you still have bladder issues, then you need referring to urologist who will check you for interstitial cystitis or IC in the 1st instance.

You can also help yourself by keeping a food and drink diary, cut out all drinks except water for a few days. Then one by one test your system with alcohol, dairy drinks, assorted fruit juices, tomato juice, fizzy pops and so on and record in the diary what the effect on your bladder on the day you test each kind of drink.

You could identify which if any drinks (or indeed foods) are making your symptoms worse and avoid those in the future. Same applies to bowel movements and to period pains. Find out what your body does and doesn't tolerate well and steer well clear of the things that your digestive system objects to.

Regards the STDs -use condoms EVERY time you have sex...

as I am sure you would hve been told in school and countless magazine articles, chlamydia and PID are much greater threats to your fertility than endometriosis will be, even if you do get diagnosed with endo at some point. STDs (there are so many of them) are so easy to contract and so easy to avoid.

If you don't have a condom... just say No. Such a simple thing to do to preserve your chances of fertility for when it matters.

Always insist that you and any prospective new partner are fully checked out (and wait for the results ) at the STD Clinic BEFORE you engage in a sexual relationship of any kind. Don't ever take risks, because it is not worth it, and if your partner is unwilling to get tested and wait for results then they're not worth it however charming they may appear.

Is the clitoral pain on the skin surface or deep inside? Can you feel a lump or is there a specific location that is very sore or this a general soreness all over?

If it is the skin surface then 1st thing to buy and use and keep for next time is a small tub of sudacrem nappy cream. sudocrem.co.uk/home

It is absolutely fantastic for relieving a multitude of skin surface irritations down below.

If you have thrush (which is much more likely after antiobiotics) then visit the chemists and get Canestan or something similar as a 1st point of treatment and if that fails to clear it up, visit the GP for prescription strength.

If the pains are deeper that skin deep, you definitely need further investigations by gynaecologist for those. It could be something pressing on the nerves there or somewhere else which is causing you to feel the pain in the clitoris, might be something like a cyst, en.wikipedia.org/wiki/Barth...

or an epidermoid cyst. It doesn't have to be big to cause significant pain, because there are so many sensitive nerves in the area down below, even small spot from an ingrown hair can hurt lot.

...could be all sorts and most are very easy to resolve but this is something a GP or specialist needs to be involved with.

Dark blood is actually old period lining that has taken extra time to get out of your body and in the meantime lost its oxygen which is what makes blood bright red. it is still the same stuff, just that is bled some days ago and there wasn't enough lubrication in your body to sluice away quickly and as the time passed before it made its way out, it lost the oxygen. Just like scabs on cuts go brown when they are healing and have no need of oxygen or a nose bleed stain goes dark brown when left to dry out on a pillow or shirt.

It is normal and nothing to worry about though it does look kind of gross when your 1st see it, it is normal and common with taking the pill.

If the pain is too much, please see your GP, they are the ones to prescribe suitable strength pain relief to you. The gynaecologist is a surgeon and you see him or her for the causes of the pain and any surgery needed to try and treat it, but meantime while you wait for that the pain issue is one your GP needs to address.

A good tip for pain killers is not to let them run out before you top up. keep on top of the pain killers, vary the types that you take so you don't become dependant on any one kind.

Ask your GP which kinds of over the counter painkillers like nurofen, paracetamol etc that you can mix with the prescribed pain killers. Only use the prescribed one as and when pain is too severe, and use over the counter ones at other times if you can.

Some of the most basic health problems down below can cause significant pain yet be really easy to treat, so long as you are proactive and seek help.

Sudacrem and Canestan are available from chemists and larger supermarkets that have a pharmacy section.

Sudacrem is usually found in the nappy aisle with baby products, but it is an essential piece of 1st aid kit. A small pot should cost a couple of quid but lasts absolutely ages and ages. It can be used by any age group and if you do have skin irritation, it would normally clear that in a couple of days.

Regards the Qlaira - this is a combi pill containing both oestrogen and progesterone.

There are a lot of options when it comes to BC pills, arm implants, IUDs etc. All have differing levels of ingredients and it may take trial and error with several to find one that suits you best. I would recommend sticking with each for 3months or so, to give it chance for your body to adjust to it before trying something else, unless you have a severe reaction in which case discuss that with your GP before trying a different type.

They have different levels of dose of hormone too, so where one clearly doesn't suit you, it may only take a slight adjustment in ingredients to find one that suits you great, and then in few years as your body matures you may find it no long suits you and you have to try something else. They all have potential for side effects, it's just a matter of finding the one with the least unpleasant ones for you.

Personally speaking I found mirena coil which actully stopped my periods completely was the very best, It is a very low dose of progesterone only (about 20% of the dose used in tablets) and it lasts up to 5 years without having to do anything. no remembering to take tablets etc.

But I have been through various others in the past with differing results.

If after all of the above has failed to improve things then your gynaecologist may prescribe a few months of GnRH drugs to shut down your ovaries in the hope that will stop your pains. If it does, then it adds to the weight of evidence that you my have endo or adenomyosis and you would need surgery to diagnose endo and anMRI to diagnose adeno.

I don't recommend these drugs to be used as a tool to diagnose, because the side effects can be ghastly and long lasting, but do read up on them in detail if you are offered them, before you decide if you want to try them or not. They are not licenced for use in minors for endo, and really ought to best used once all your bones have stopped growing at around age 22, because they will reduce your bone density among other things.

Very best of luck resolving your health issues and getting back to normal living again, and I hope it isn't endo or adeno but something much easier to sort out.


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