Have I got Endometriosis?

[astrogirl7]

On reading others symptoms on here I think I may have. Bloating, abdominal pain continuously since Jan, bowel and bladder pain, frequent peeing, pain on intercourse, stomach skin distension, kidney and back pain etc. Any internal examinations I have had are excruciating....and still had no diagnosis. Latest procedure was Hysteroscopy....biopsy of Endometrium....unbelievable pain. How can one differentiate these symptoms from others? E.g I have bilateral cysts one of which is haemorrhalgic. Would these cause this much pain?

[jojo777]

I dont have a certain answer for you, but the only way to diagnose 100% endo is through laparoscopic surgery. Any scans (MRI, CT, ultrasound) wont show anything unless there is a big cyst or something similar.

You should make a list of your symptoms, go back to your doctor and ask to be referred to a good endo gynae in your area. You can research a good one first and then ask your GP to refer you to this doctor.

Heat pads/patches are always a good relief from pain. Bloating could be significantly reduced with good diet e.g. to stop eating wheat/gluten.

Have a look in end odiet, may of us found great relief by changing our diet:

endo-resolved.com/diet.html

Good luck x

[astrogirl7 in reply to jojo777]

Hi jojo777,

I have lost a lot of weight recently mostly due to nauseous feelings from this condition....I have found I can only eat a few mouthfuls before I feel sick and bloated. My GP has agreed to send me to a specialist Gynae. I will take a look at the website you suggested and thanks for your reply.

Astrogirl7

[Impatient]

You might not have endo, and i hope you don't, because those cysts alone can be causing all your recent symptoms. The fact that this is only a recent since january gives me hope that this is not endo and just your hormones going mental because of the cysts. With them removed, with luck you should be able to get back to normal again (till next time you get one.)

Endo tends to have been around for most women for many years with mild getting gradually worse as time goes on. Rather than a very sudden onset.

whereas cysts are relatively quick beasts to grow and cause problems in a very short space of time. A leaking cyst or a burst cyst can be excrutiatingly painful and all the while it is there your body will be fighting off the attack of the cyst. bloat is basically fluid build up to protect your body, like a blister fills with fluid.

Cysts near the ureter (the tube from kidney to bladder) can really affect your peeing and a cyst putting pressure on your bladder can give you all manner of peeing problems which in turn can encourage infections.

How big were your cysts last time they were scanned and measured? if they are over 4cm then you are able to have them removed with a lap op eventually (NHS waiting lists permitting) and during that procedure they will check for endo too.

There's nothing you can do in the meantime but to keep on top of the pain killers and wait for the cysts to be taken out. There's no diets or hormone treatments for ovarian cysts.

Sometimes they will just die away and be reabsorbed by the body, sometimes they leak or burst and refill up again, somtimes they stop growing any bigger and sometimes they grow and grow and grow.

You will probably have a follow up scan again on them shortly and if you don't get an appointment then chase that up with your GP.

Ask for a referal to a gynacologist if you haven't been refered yet, so that he/she can discuss with you a plan for removing the cysts with surgery and arrange with you what you want to do after that. If you want to stop your periods for a while then the lap op is the best time to hve a mirena coil installed too. Certianly worth serious consideration, because endo or not, mirenaa stopping your periods is liberating you from pills periods and period pains.

Best of Luck

[astrogirl7 in reply to Impatient]

Hi Impatient,

My bilateral cysts are 4cm and on my ovaries, my womb lining measured 17.5cm. I had CA 125 test which was slightly raised at 58 (normal 0-37). I have had bloated stomach and terrible pains on and off since my late twenties but was always being told by my then GP that it was IBS or a wee infection. This is the longest time I have had these symptoms. I have been told by the hospital that I should, like you said see a Gynae specialist and this is now being arranged by my new GP.

I am 50 and wondered whether you think the Mirena would be helpful to me?

Thanks for the information and suggestions you provided, they're very helpful.

[Impatient]

I'm 45 and mirena has been absolutely fantastic. I hope I can still be on it at 50.

Only been installed coming up for 2 years, but my god I wish it had been around when I was in my teens onwards. I had mine put in during an op, so if you do have surgery on the cysts, definitely have the mirena put in then, and give it around about 5 months to get working. It will hopefully see you through to the menopause, but if it works and if your ovaries have not retired in the meantime, then you can have another put in when the 1st one runs out.

Raised CA125 and cysts and that you have infact had symptoms a long time (not just since January) certainly do point to endo. And your cysts are borderline for being removed 4cm is usually the guideline.

If you have not had a lap op and not been diagnosed with endo, then having a raised CA125 ought to get you fast tracked for surgery because of the teeny weeny risk of it being cancer, even though it does have all the hallmarks of endo, that small risk does get you fast tracked.

You should expect a gynae appointment within 2 weeks and probably surgery in the following few weeks depending on the surgeons schedule. at any event, it won't be MONTHS.

Unfortunately once you have been given a diagnosis of endo, you are no longer on the fast track to anything, so subsequent appointments incur long NHS waiting lists.

The more you can get your surgeon to do during the one op the better it can be justified.

I had one of my ovaries removed (it was given me so much recent trouble with cysts) but the other side even though it had an 8cm cyst was no bother whatsoever I didnt even know it had a cyst till my last scan before the op. It was hiding.

So I kept the friendly one, and got rid of the rebellious one and had the mirena parked down below. Lots of other things done too, but they were the main dramatic changes in my fortunes.

[astrogirl7]

Hi Impatient good news..had 2nd CA125 now reads 28, am pleased about this. But still in pain in groins, vagina and thighs real bad. I am pleased to hear that you had positive experience with Mirena. I was offered it at my Hysteroscopy but wasn't well informed enough to make that hasty decision then.

Its crazy how the abdominal pains a woman gets could be from either cysts, polyps or endo etc but yet the most obvious one gets blamed and hardly ever do you hear endo mentioned.

I originally thought my stomach may be bloating because of my disc, i explained this to the doctor...she said no.

Now she saying that I may be getting pain association from my back, in my stomach....but there seems to me to be a real difference in sciatic nerve pain and this pressure I feel in my distended stomach.... as if my bladder may burst!

Could nerve pain really make you feel bloated, do you think?

Don't know if you have children Impatient but maybe if I describe to you the feeling you have when pregnant and the baby s head is pressing on your bladder....that's what it feels like.....constantly. Most annoying pain with breathlessness.

Latest convo with doctor she says she is waiting for the report from Hysteroscopy before she makes a decision on where to go next. I have told her that I think its endo and she knows all my symptoms...will have to wait and see.

Take care and thanks for your input, it was most helpful.