Endometriosis or IBS?

[GabrielleG]

Can anyone help me with understanding how the symptoms of these two conditions differ? My 13 year old daughter has been diagnosed with IBS albeit her pain started with a hemorrhagic cyst which was seen by ultrasound. The cyst which was 5cm in size burst naturally but her pain and nausea continues. We have been passed from the gynae consultant to a pediatric consultant hence the diagnosis of IBS and the belief that the cyst was just a red herring. I am struggling to believe this as when her periods are due, she is crippled with pain and has swelling in her lower abdomen. Any help gratefully received.

[MrsT2013]

How awful as a Mum to Ser your daughter suffer so much, I know how hard it was for my Mum and dread one day the thought of my baby girl suffering in any way. I started my periods at 10 year's old where the pain was horrendous and it was only 9 years later I finally had a laparoscopy. I personally have both endo and ibs and the pain is very different. I personally would go to your Doctor and DEMAND to see gynae. You have every right. I hope you and your daughter get some answers <3

[GabrielleG in reply to MrsT2013]

Thank you so much for your reply. Can you tell me in your experience how the pain differs between the two?

[MrsT2013 in reply to GabrielleG]

IBS is very much a cramping knotting pain, as if you want to go to the toilet all the time, even if you have been. Endo is a very deep dull pain and stabbing typeof pain that goes into your lower back, hips <3

[GabrielleG]

Thank you for that - it is very helpful! We are keeping a diary of the different types of pain, when they happen etc.

[MrsT2013 in reply to GabrielleG]

You're very welcome. Great idea on the diary. Hope your daughter gets help very soon <3

[squidgy]

Sorry to hear you are being messed about.

I have severe endo inc on my bowel. I was told I was too young for endo when I was younger and it was IBS. Even saw a gastroenterologist in my late 20's who told me that endo does not effect the bowel and cause those symptoms. Even though I told him I had read it as fact! Makes you so angry.

A wonderful lady on here once put it quite well. Yes it could be IBS but what does that actually stand for if you break it down?...Something is irritating the bowel! So what is irritating it? IBS is not an actual thing but a name for not knowing or not taking the time in looking at what is irritating it. Be it a food intolerance, blockage, or endo etc! Endo on the bowel can cause diarhea, constipation, bloating, pain when passing stools, feeling full all the time and needing to go, abdominal pain etc etc.

I am now 32 and it took me 18yrs to get diagnosed. Please do not give up fighting. You know its not right and your daughter knows her body.

[GabrielleG in reply to squidgy]

Thank you very much for your reply. I had no idea you could get endo on the bowel. We have done all of the food tolerance diets etc and they have made no difference so it is frustrating to just be given the label of IBS. I really appreciate your insights.

[squidgy in reply to GabrielleG]

no problem at all. Glad to have been of some help. Definitely keep fighting esp as the food intolerance tests have come back ok. It will be worth it in the end.

Hopefully investigations will show it is something else and can help your daughter as I would not wish endo on anyone. But to find out if it is endo at an early stage of life and what parts it is effecting will be a good thing to know.

A good book about Endo is the Dummies Guide to Endometriosis, which covers a lot inc bowel endo.

It may be when you get to see a specialist that they don't want to operate on your daughter yet as she is 13 and may want to leave the Laproscopy until she is older. I have heard of this. But to be told that they agree in principle with what you think, is a little comfort.

[GabrielleG in reply to squidgy]

Thank you for that recommendation, I will get the book. You are correct that they don't want to do a laparoscopy which I quite understand but I feel we don't yet have a proper diagnosis - which seems to be the case for so many people!

[squidgy in reply to GabrielleG]

I found the book was cheapest on amazon. But it may be cheaper elsewhere now or even in your library? Although I wouldn't hold your breath about it being in a library as books on endo are very rare to be found in them.

Yeh is definitely a common story of endo sufferers having a long time to get a proper diagnosis. I finally got mine as was undergoing fertility investigations and they did a Laproscopy and found I had severe endo. That was June last year! Found out endo so severe and blocking my tubes, on my ovaries, bowel, uterus that IVF only option.

[Hidden]

Hi! I have quite clearly had endo since a similar age. It was just put down to painful periods and more later in life, IBS. I am now 39 and only recently diagnosed. The crippling pain and bloating your daughter has are consistent with the symptoms I had until I started to have my babies at the age of 29 and it temporarily went away. All three of my babies were back to back, now it's thought that this was actually because my uterus is stuck to my bowel with endo! The pain has now returned and I am stage 3/4. I would continue to keep the diary and ask for a new referral to a specialist. In this day and age, these lengthy diagnoses should now not be happening. All the best! X

[GabrielleG]

Hi, thank you for your reply. Can you explain what you mean by stage 3/4? Also, is there no treatment? I thought the endo could be removed under laparoscopy? It sounds as if you have had a terrible time! My daughters pain is only occasionally in the back - more often in the front of the abdomen. Do you know if the pain always shows itself in the back?

[squidgy in reply to GabrielleG]

Saw your questions and thought would give what info I knew/understood. Hope this is ok.

The stages refer to how severe the endo is. So stage 4 is severe. However you can have mild spots of endo and suffer lots with pains/symptoms or have severe endo and hardly any pains. But also vice versa. Again it is an individual thing.

Yes endo can be removed..but it is only temporary as it grows back. This varies on person to person how long it takes to grow back and at what rate. Some find they can go on for years after without the pains etc other only a few months.

Treatments can inc the contraceptive pill, mirena coil, hormone drugs to put your body into a temporary menopause, pain killers. But nothing to abolish it. Just to try help ease the pains/symptoms.

[Hidden in reply to GabrielleG]

I am so sorry, I didn't see that you had responded until now. Squidgy has answered those questions though! X PS my pain is mainly in the front of my abdomen. All the best!

[GabrielleG]

Thanks so much. I have bought the book you recommended so will get myself up to speed. This Forum has been a tremendous help.

[Brownlow]

Go to the Endometriosis UK website for plenty of info. Here's the page on bowel endo endometriosis-uk.org/endome... Scroll down to the pdf for more info. She might not actually have endo on her bowel but the presence of endo in the pelvis can upset the bowels.

If you think that all the evidence points to endo then put your case together with the symptom diary and printouts from the endo uk website and demand referral to an endo specialist. You have the right to choose your specialist and here is the list bsge.org.uk/ec-BSGE-accredi... Do you recall any endo type symptoms or perhaps any other female relatives?

Please read Lindle's excellent post healthunlocked.com/endometr...... and print out from the various links in case the GP is reluctant to listen.

You might also come up against this old chestnut "she's too young to have endo". This is Endometriosis UK's youth ambassador diagnosed at 14 endometriosis-uk.org/alices...

You can get endometriosis cysts on the ovary. They're called endometrioma. They can burst causing incredible pain but they can refill too.

Bear in mind that your daughter might not have endo. PCOS is a possibility among other things. However, IBS is a non-diagnosis in my book given the presence of other symptoms.

[GabrielleG in reply to Brownlow]

Thank you so much for this really informative reply. I have had endometriosis removed by laparoscopy plus an endometrical lump removed from my groin so I guess it is in the family! Having had a couple of ultrasound scans I am fairly sure it isn't PCOS so I will follow your other excellent recommendations.

[Brownlow in reply to GabrielleG]

That's good evidence to add to the case for endometriosis! Unfortunately it does appear to run in families.

While you are sorting out the right referral there are some other things that might be worth trying on the lifestyle front but I realise a 13 year old might be difficult to persuade. Try these resources.

peacewithendo.com

endoempowered.com

endo-resolved.com

There is a lot of information in these sites but we are all different and what works for one person might not work for your daughter. On the diet front a helpful site is deliciouslyella.com Ella overcame a debilitating health condition by focussing on what she ate. She's in her early 20s now and might appeal to your daughter a bit more and you might find some handy recipes.

[GabrielleG in reply to Brownlow]

Hello, thanks so much for all of this useful info. I follow Ella in the DT newspaper so must now make a big effort to try out the recipes. Your help is really appreciated!

[GrittyReads]

Sorry to hear about the trouble you are having. However, it is lovely to realise that it is now possible for concerned mums to be able to help their daughters in this way. I guess my mum (bless her) didn't know any better: her pains had always been dismissed as 'just period pains' ... and it was the same for me (this was late 60s on) , so for years we just accepted it. Fortunately my pains were mild compared to what most people on here suffer - and compared to what you describe for your poor daughter.

I didn't get a diagnosis of endo until 1994, when I was in my 30s, and only then because I'd stopped the pill after my husband's death - it had always been enough to control my pains. They didn't remove the endo then ... so I was on the pill on and off until 50, and it was during the 'off' times that I began to have other pains that my GP said was ibs.

However ... the ibs would go away - along with the endo/period problems - whenever I was on the pill.

The only difference that I noticed with regard to the 2 sets of pains, was that the 'ibs' pains were in 2 distinct parts of my abdomen, and were there mainly in the second half of my cycle, and not just around the time of my period, although it was often worse then, along with all the cramping, stbbing, bloating pains. Plus, I didn't get the other common symptoms of ibs, such as wind and constipation and/or diarrhoea at other times.

It wasn't until things became unbearable - I had to stop the pill at 50, and the perimenopause was also making things much worse, with periods happening every 3 - 2 weeks - that I saw a gynaecologist privately. He said the ibs was almost certainly linked to endo on or around the bowels. At that time I had a mirena coil fitted, and all pains have long since disappeared. I assume my ibs was linked to endo on my bowel, but cannot prove.

However, as others on here have already said, endo on the bowel is extremely common - in fact, endo can get almost anywhere in the abdominal cavity, and people on the site have referred to it developing on the diaphragm. The 'Dummies' book sounds great, so I would follow that up, along with all the other good advice on here. However I agree about insisting that your daughter see an endo specialist or a gynae who specialises in endo.

Good luck to you both. We are relatively lucky, now, that in many areas of the world more is known, and much more can be done. Your daughter is also lucky to have such a caring pro-active Mum.

[GabrielleG in reply to GrittyReads]

Thank you so much for your reply. This forum has been a great help - it has come as a real shock to me to hear of so many people suffering with this horrible disease.