I need help. I think i have endometriosis - Endometriosis UK

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I need help. I think i have endometriosis

pegleg92 profile image
6 Replies

I need help. I think i have endo. I have symptoms of IBS for a year now and around my time of the month I get really bad back ache sometimes i can barely move and really bad pains by my ovaries. I also get clotted periods all te time. I have horrible moods were i get so low and hate myself and other days i am bak to normal. But more down days than up days. I get sore ribs aswell. Not all the time but regularly. I just want to know how you go around getting checked for endo and how long it takes because i cant take this much more.

Please help me

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pegleg92
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6 Replies
Impatient profile image
Impatient

Sound like a possible endo case to me, but it could just as well be other consitions causing your symptoms. As they are mostly noticeable when you are having a period, you can ask your GP to refer you to a gynaecologist to discuss your symptoms and undergo tests and scans.

If the gynae also suspects endo, then the only way to diagnose it is to have a keyhole surgery called a laparoscopy or lap for short.

The waiting list times for seeing a gynaecologist never mind getting surgery are getting longer and longer, so unless there is anything screaming out ENDO in the scans you will have to bide your time and wait like everyone else for their appointments.

And get used to long waits as they are I' sorry to say one of the worst aspects of endo care in the UK.

Meanwhile you do need to see what can be done to control your symptoms better.

Stronger pain killers can be obtained on prescription from your GP.

You might want to try out Birth Control pills or implants or Mirena Coil to stop you having periods for a while to see it that eases the pains and makes life more bearable.

They should stop heavy bleeds and clots and period pains and PMT moods if you get the right balance of chemicals, then there shouldn't be many if any side effects.

However it can be a long process of trail and error to see what works best for you.

You might have a bad reaction to one type and find another works fine, so do be prepared to try several one by one to find what's best.

Ultimately surgery is the only way to actually attack endo, by removing it or lasering it back, and there is no cure it will grow agin, perhaps not in the same place but somewhere else, and all the treatments apart from surgery are just masking the symptoms (usually the pain aspect) .

when you say sore ribs do you mean all the way round, or sore at the front in which case are we talking sore boobs rather than bones? or sore lungs when you breathe? or sore diaphragm which is the layer of tissue across your trunk just under the bottom ribs separating your lungs from the stomach and liver etc.?

You have a lot of ribs and to say they are sore needs clarifying, because that is not normally a sign of endo and could be any number of other conditions.

If you have ovarian cysts, they can cause sore boob tissue, but so can hormonal upsets when you are on your period too.

1st step is see your GP with a list of your symptoms and try and get something for menstrual control or better still stopping your periods.

Then if symptoms still persist is to push for an appointment with a gynaecologist for further investigation.

pegleg92 profile image
pegleg92 in reply to Impatient

Thanks so much for the rrply. Being only 20 its a big worry for me. Knowing that eno can make concieving difficult its a worry for me. Im already on the contraceptive pill and the back pain only starts whn im off the pill

my rib is sore on the left towards the end of my ribs if that make sense.

Its aldo so painful when i hve intercourse. During penetration and also for about half an hour after it feels like major cramp in my vagina. Doubled over.in pain.

I just wish my moods wer better!!

Is the lap uncomortable? Do they put you to sleep?

Sorry for all the questions x

Impatient profile image
Impatient

The lap is a full blown general anaesthetic because a lot of work might be needed inside of you. It is rather painful when you awake after and the morphine wears off and you are on less strong pain killers, the pain is not from the operation wounds or what was done inside so much as the trapped gas that they pump in to you which is hard to shift and can really hurt till you can get rid of it by burping or farting as and when it makes its way to be let out. While its trapped in you, it's more that just how sore you get when you drink a can of coke and get trapped wind. but it's achey sore rather than stinging.

The lap might not make any difference to painful sex. Some women never get rid of that pain, but it's worth speaking to the surgeon to have a look and see if it is something that can be fixed by surgery or not.

squidgy profile image
squidgy

I agree with everything that Impatient says. Painful intercourse is a symptom of endo too.

Re the painful intercourse, I know it sounds silly but have you tried different positions? I too suffer from painful intercourse (penetration, during and after - which can be the next day too!). I am not saying a different position will cure it, but it may make the pain a little less severe. I have found that the boring missionary of me lying down, husband on top is the best for less pain, but the more interesting and enjoyable positions (i.e me sitting on husband lap, doggy style etc) is more painful as it is deeper. But it may be another is better for some than others. Like I say it wont cure it but it does help. Try not to let it stop you having a sex life, again I know easier said than done. It has had an impact on mine but I am still having some. A kind, understanding partner is always of help. Another thing is not always having penetrative sex. You can still have fun and passion without it. Hope that helps a bit x

pegleg92 profile image
pegleg92 in reply to squidgy

Thanks so much for the reply. I will hve to tru this. Im lucky i have a boyfriend who is so understanding :) xx

tortoiseshell profile image
tortoiseshell

Hi,

I was just passing by hear, I'm usually on the pelvic pain website, but I used to think I had endo. .

just wanted to say, pain on intercourse can be due to other things to. Like PID, and blocked tubes.

However you are young and it may well not be this? ..

I just thought i'd mention it hope thats ok. cos I thought it took a long time for my diagnosis:

I was told i (over several years) I had ibs, constipation, and tests for Coeliac, had an endospcopy to look at bowels. ..ended up having a diagnostic lap for endo 2 years ago. They found nothing but a small cyst. However the pain kept coming back.

Just wanted to say - keep track of your symptoms in a diary if possible, and how it relates to your period, or when u have sex. tell your doctor all your symptoms. And keep pestering them if your in pain but they aren't helping.

best wishes, and I hope u get the answers your looking for x

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