Help and advice needed after Ultrasound

[Leenie0811]

Hi everyone,

Im relatively new to the online forum world and this is my first post. after reading some of the things you guys have put I was wondering if anybody could offer any information as to how I should go about getting the answers I need.

Ill start from the beginning, I first started my periods when I was approx 13yrs old at the time living with my dad and like any teenage girl didnt discuss with him at all (way to embarassing) from the word go my periods were irregular they either didnt come every month or I could get 2 in the same month. I would start in the lead up to my period with intense back and abdominal pain however as I didnt have any other females around me I assumed this was normal and carried on going to school. When I moved back in with my mum at 14/15 she took me to the doctors for the pain and allowed me off school when I was on my period. The pain lasted usually 2 to 5 days after my first day bleeding the doctor put it down to heavy periods and recommended pain killers, these didnt do anything for the pain.

Some year passed and I went onto contraceptives I was originally on the pill you took for 3 weeks and then break for a week whilst this gave me a regular period the pain just became worse as it was more frequent and I had noticed this pain had started happening inbetween periods. I went back to the doctors and decided to try another form of contraception and went on the implant. The implant caused a lot of problems in the initial stage as I bled for approx 4 months with more complex pain in my stomach and bottom, I was told this was a side effect so carried on 2 years passed and with virtually no periods I still had what I thought was period pains when I would have been due on, this pain was the same as before when I had my period only now I was working and had go in reluctantly as my boss was very harsh on time off for womens problems. I persisted with the pain one month and ended up in the local A and E with a suspected pelvic infection looking back this seems more like a ruptured cyst. As it came to the last year in my inplant the bleeding and pain started again like how it was on installing so back to the GP I went they decided to take it out. My GP said the hormones were wearing off and suggested I went back on the pill.

Finally getting to more recent times I had been on the Cerelle pill for some time and was still getting pain and irregular periods so I went back to my GP with a list of symptoms I had been keeping a list of these included:

Period pain, heavy bleeding, abdominal bloating, back pain, leg pain, irregular bowel movements...

they suggested I went onto a pill that gave me a break to get regular periods I am now on the triadene pill and they sent me to my local hospital for an ultrasound of abdominal and pelvis. The results were that I had one normal sized left ovary and a puffy right ovary which was one and a half times the size of the other ovary. At this time they suggested I had PCOS 2 months passed and I started with servere pains on my left hand side in particular when passing urine and stools (sorry if too much info) this was for 2 weeks before I went to my GP was tested for urine infection came back clear so sent for another ultrasound.

Second ultrasound revealed a 4.5cm cyst on my left ovary, now my doctor has recommended I go to the local Gynaecologist for a consultation for next steps.

Ive been reading some of the stories on here and have a friend who has been diagnosed with endometriosis who recommended posting on here and seeing a specialist at an BSGE centre. Can anybody offer any advice or share similair experiences?

Im getting to the point where its really affecting my life and my mental state getting me down, will I be stuck with this pain for the rest of my life?? Im only 24 and might want a family in the future

Thank you for reading xxx

[SallyE1978]

Hi I was referred to gynae and had a lap and ablation. This was after ultrasound suspecting a large fibroid which turned out to be a collection of endo lesions.

What you are describing is the normal routes the health service would go through as far as I know.

The pain and discomfort does interfere with life and you need very supportive people around you. Please don't think endo means the end of being a mum either I know some people have difficulty but on the flip side loads also don't!!! I have two children.

Sending hugs and positive thoughts xx

[Leenie0811 in reply to SallyE1978]

Hello, thank you for the reply I get the feeling my current GP isnt linking the cyst found and the pain Ive been experiencing together to look at a potential diagnosis its all iffs and butts at the minute. Do you have any suggestions for information to take to the Gynaecologist? xx

[GrittyReads]

Talk to the trained advisors at 'Endo UK' - see link at the top of the page, they 'host' this site on 'Health unlocked. Also, read around on their site and check the links about BSGE Clinics. Plus, read around the posts on here and always keep an eye on the 'Related Posts' box (top right hand of page) as - with anyone's post on here - this box shows links to similar topics. So, when you find something that's useful, you can see what others have said that's similar. Further, have a look back at posts by 'Lindle' as she is a mine of info on Endo - and she now has a Facebook page devoted to Endo.

Many GPs still don't really understand the complexities and potential agonies of Endo, and even many hospital gynaecologists are not as 'on the ball' about Endo as they could be, as they spend so much of their time dealing with all sorts of other gynae issues. The Gynaes in BSGE Clinics are specialists in Endometriosis, and they often have bowel and urino-genital experts on hand, as well, so there is a concentration of all the skill and knowledge needed specifically for Endo. These experts know how to look in parts of the abdominal cavity often missed by general gynaes, they also recognise all the different types of Endo tissue (certain types are often missed and not removed); finally, they are also practised in the particular surgical skills necessary to remove Endo in difficult areas.

There is a specific protocol that is supposed to be followed by GPs for referring women with bad Endo to the BSGE Clinics, but many GPs either don't know, or don't realise the extent of the woman's problem. Also, general gynaes are not supposed to treat women with endo that they know come under the remit of 'BSGE Clinincs', but again this is not always done. So, talk to the Endo UK people - and see if you have a local 'Endo Support Group', they are listed on Endo UK - and ask about how to get your GP to refer you to the nearest (or best?) BSGE Clinic.

NB We are not supposed to mention the names of any medics, hospitals or specific BSGE Centres on here, as 'Endo UK' is a charity and could be in trouble if we do - but this info can be mentioned in private messages.

I hope this helps, and that you get some quality advice and treatment soon. Meanwhile - as well as becoming your own best expert on here, which, sadly, is what is necessary with conditions like Endo - make sure you are treating yourself, having fun, and doing all you can to coddle yourself and keep the stress at bay ... always important to love ourselves.

Take care