Endometriosis UK
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going through diagnosis

hello everyone. i have just recently seen a gp who mentioned symptoms relating to endometriosis. i am not awaiting a scan date to check my ovaries. i have had alot of pain in my lower back and chest dispersing into my waistline and groin area. i dont have periods as my monthly contreceptive stops them. it was mentioned if i have cysts i will be on hormone medication or if too bad then surgery :( . i have had 4 children so not planning on more. i have had these pains for months. has anyone else experienced not having periods suffer in the long term with this condition? also any advice on what happens along the diagnosis route would be kindly appreciated.

thankyou for reading

3 Replies

im awaiting a scan date sorry


Several of the contraceptives can make you more prone to develop ovarian cysts. You my have just the one or more than one but if they are slow leaking filling up as much as they leak out then the pain can be very persistant and not noticeably worse during a period though sometimes that can be the case.

There are several types of ovarian cysts and having an ultrasound scan is certainly the 1st step to identfying if you do have cysts and often what type of cyst.

The only one that is an indicator of edometriosis is an endometrioma cyst, this is filled with blood and appears quite different on a scan to the other types which can be mixed, or clear liquid in content.

Any of them can leak and cause a grumbling annoying pain. Sometimes they burst completely and are reabsorbed in to the body, sometimes they do refill, and depending on the size of the cyst and how much it is impacting your daily life, surgery to drain and hopefully remove them is an option.

It doesn't prevent new cysts growing and once you have had one you are much more likely to get them again than not experience another. So while surgery can certainly help, it may not be the end of the story.

I am on my 5th cyst in 3.5 years, never having had any that I knew about before, but we do all get cysts, most of the time as part of ovulation and they pop or deflate and that's it. But just sometimes the wretched things do grow and keep on causing problems not only from leaking but also if they are heavily resting on the bladder for example or get twisted (OUCH).

It's one reason for a scan.

Other possibles are hydrosalpinx which is swelling in one or both fallopian tubes which can build up over time to the point it becomes painful.

Endometriosis, Adenomyosis, Fibroids all can cause problems and so can simply having adhesions and scarring from previous tummy trauma - might be a past surgery from years ago, but could be any trauma that can trigger a cushion of adhesions to grow and they grow and keep on till they can stick organs together. As the name suggests they are superglue strong sticky growths. They can lead to your abdominal organs all being stuck to each other and unable to freely move as they would before this can be painful and cause disruption to how your body functions, the urinary tract system and the digestive tract can both be compromised by adhesions.

A scan will not detect all of these but there might be clues and it can certainly rule out certain conditions narrowing down the list of possible causes of your pain. Keep on at your GP for proper investigations. There is plenty more your Doc should be doing to get to the cause or possible cause. it might be easy to treat, or need surgical intervention, but no one knows till more work is done to identify what it might be.

Lots of ladies still have endo while on contraceptives to stop their periods, the contraceptives reduce chances of new endo growth but don't kill or cure existing endo. And do have a slightly increased risk of the ovarian cysts forming - not just endometriomas.

Once your lower tummy has been scanned,if cysts are found and the type looks identifiable, they measure them. You may then be on' watchful waiting' and rescanned a couple of months later to monitor if they have grown or disappeared. There might be cause for alarm and they need to be removed very soon, being both big enough for surgery (roughly 3.5cm or 5cm depending on the type) and coupled with a high result on a CA125 blood test you may find yourself fast tracked for the op. Which is great news for jumping NHS queues, but while there is a tiny risk of cancer in high risk groups (those over menopause age or carrying BRCA1 or 2 genes) for the rest of us it almost always just means endo.

Though the blood test is not reliable as an indicator, a low result for example doesn't rule out endo.It's just that a high result is usually endo. It's a very cheap blood test for your GP to arrange and you can get it done privately too for about £25 if your GP is refusing.

The waiting lists for scans is long in some parts of the country.

Meantime make sure you have strong enough pain relief from your GP. Over the counter strength will not usually be strong enough for a leaking cyst's pain level if it turns out to be that.

Besides gynaecological conditions there are other medical issues that can cause a similar range of symptoms, getting your pee tested for infections and kidney activity my also be something to look in to.

Or there could be number of unrelated issues going on at the same time. At any rate don't be fobbed off, your GP needs to start investigations and a battery of tests to determine what's what.

If he/she is not willing to do that - then seriously consider switching to a different GP in the practice or switching to new medical practice even if that means traveling further away from home.

You know our body best, and know when something is not right and is impacting on your quality of life, so push push push the GP to do something about it. That's what they're paid for, though there sure are some darned lazy ones out there who will pack you off home with any old excuse and an inappropriate prescription.

Very best of luck.


I mentioned this book yesterday on another thread, apologies for the straight copy and paste here as I'm just getting ready for work..

I found this book incredibly useful when I was first diagnosed and feeling confused and scared.


It is a really straightforward resource on symptoms and treatment options and was brilliant at giving me information before I saw my consultant. It also gives other possible options if the symptoms are not endo. Go armed with a list of questions and don't be afraid to write them down and get them out to refer to. In my experience I have had really good responses from doctors when I have been informed and know a bit about the treatment options available. All the best.


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