Can anyone help me please?: I've been... - Endometriosis UK

Endometriosis UK

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Can anyone help me please?

Pixie23 profile image
7 Replies

I've been having problems for at least 5 years now. Being only 22 it seems that the doctors are unwilling to find an answer :(

My symptoms are:

Constant, severe lower abdominal pain on the right side, I can sometimes feel a sort of lump there?

Bloating

Mix of constipation and diarrhoea

Nausea and dizziness

Heavy and very painful periods

Lower back pain

Shooting pain down my leg, also felt sometimes going up/in my vagina

Constant vaginal discharge, sometimes looks like thrush/bv

Urine infections/cystitis

Swelling of the fingers

Random bruising on my legs

Went to a gyn around two years ago and he couldn't find any reason for this.

Ended up in A&E two years ago and they removed my appendix; which clearly wasn't the issue as I'm still having the exact same pains.

Went for an Ultrasound today (on my abdomen, kidneys, also internal look at my pelvis) and everything was declared ok..

I am on the contraceptive pill, but the pains started 3 years after being on the pill. I've tried taking a break from it.. but I was still in pain.

So where am I supposed to go from here? Every time I got to the GP I'm just given painkillers.. it took three visits to my GP complaining of abdominal pains before a GP actually felt my stomach, the rest just handed over a prescription straight away.

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Pixie23 profile image
Pixie23
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7 Replies
jojo777 profile image
jojo777

Hi

The first thing to do asap is to ask (demand) a referral to an endo gynaecologist. you need to be seen from a specialist and take it from there.

Many of your symptoms are endo related, but it could be something else as well. They took my appendix out too (it was fine) only to find out I had endo!

Endo cannot be shown in ultrasound, MRI or CT scans (only if they are cysts etc)

Good luck x

Dear Pixie23

Hello! I have been a sufferer of endometriosis for 20 years +. I have symptoms similar to the ones that you have listed above. The symptoms can also be due to other conditions.

My advice to you would be to go back to the GP and tell him that you want to see a specialist. If he refuses to do this then you need to change your doctor. This is your health and you have a legal right to be taken seriously and to be referred to a specialist.

Take good care of yourself.

Barbara

Impatient profile image
Impatient

The bruising is often caused by being anaemic, and with heavy periods and lack of iron in your diet, this is common. So get some iron tablets in to your diet to supplement the loss of iron in the bleeding and it should result in less bruising. You can also eat iron rich foods to help too.

Nausea and Dizziness can also be symptoms of anaemia as can tiredness.

So that's one problem which you can try and solve yourself.

It can also be the reason for constipation and if the swelling of you fingers is at the tips mainly, then that's another symptom of anaemia.

Your doc can do a quick blood test to tell you if your are anaemic, but the remedy is something you need to do yourself in the foods you eat, and taking iron supplements which are available from most chemists and big supermarkets.

As for the bloating, that could be caused by an as yet unidentified gynae condition, or intollerance to certain foods.

You could perhaps try the endo diet for 2-3 weeks to see if cutting out certain foods helps ease the symptoms. Gluten foods seem to frequently cause troubled digestion, bloat and IBS symptoms from what other ladies have reported here, worth trying out removing gluten for a while too.

Another option to consider is switching from BC pills to the Mirena coil with a view to stopping your periods for a few years to give your body a chance to calm down. It doesn't suit everyone, and some women have problems with it, and others think it is amazing. I personally think it has been fantastic for me. It does take a few months to kick in, but once it's working wow... no periods... no period pain no stress about will I come on, when will I come on, how long will I be on etc. It gave me back my life instead of being constantly worrying about my painful heavy periods.

The great thing is that if you do want to have it removed at any time, if you want to try for a baby or even if you are finding that it doesn't suit you, it can be whipped out by the nurse at the GP's.

I wouldn't swap mine for all the world right now, for me it really has worked wonders. Definitely worth considering trying that if you can. It also means you don't have to be taking BC pills every day too.

Best of Luck finding out whats wrong and getting proper treatments.

smith65993 profile image
smith65993 in reply toImpatient

you could also have an bowel problem which is what I have my doctor sent me for a scan not very peasent but they told me my condition i have to avoid some types of food and need to take medication called Loperamide Hydrochloride it can effect any age i am 63 yet had it for some years from Ray

JellyBean21 profile image
JellyBean21

I am currently having exactly the same problem and I'm the same age as you. I saw a gynae in October, she was completely dismissive and reluctantly agreed to see me again. I've now received a letter, 3 weeks before my appointment with her, referring me back to my GP anyway. I can completely understand your frustrations, just to get a referral I had to change GPs in the first place.

I strongly recommend seeing a different doctor, it seems like a lot of hassle but could be worth it in the end. My new GP referred me before he'd even seen my notes (they hadn't been transferred to my new surgery yet), it's just a shame my gynae was as useless as my orignal GP. I find the worst part is the fact you get treated like you're making things up, and then you start wondering if it's just all in your head!

Keep fighting it.

Good luck and don't let it get you down!!

Eggcustard profile image
Eggcustard

Hi, unfortunately some GP's don't seem to have much knowledge in this area. If your GP won't refer you then you could try a different GP at the same practice or move to a new practice. If I were you and I could afford it I would get a private appointment with an endo specialist, you will save yourself a lot of time and hassle.

If you need to know where to find a list of specialists look on bsge.org.uk for the list. Hope this helps and good luck xx

Pixie23 profile image
Pixie23

Thank you all for your replies, it really has made me feel so much better. I'll be demanding to see a specialist straight away, hopefully I'll get it sorted soon :) xx

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