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IBS, Endometriosis or what????

(45 Posts)
gr8kids Mon 10-Sep-12 19:26:43

Hiya all. Going to try cut a long story short and ask please if anyone has had the same experience or any advice for me please. I had horrendous bleeding for years since a teenager (I am 37 now) until 3 years ago when I had an Endometrial Ablation (novasure procedure) prior to this they tried giving me all sorts of pill, coil, implant etc to help with the bleeding and pain. None of these helped so ended up giving me EA and not too long after this, did they do a laprascopy to check if I had endometriosis. Which to me seemed back to front but anyways, it came back clear. I started spotting end of last year, which I don't have a problem with seen as I haven't had any periods since EA. But then start of the year my pain started up again. It's just gotten worse. It seems to happen every 2 weeks or so where I have pain under my belly button, left side lower abdomen, also to the right, horrendous back ache, breasts sore, the mood swings well not good at all, I'm tired all the time but also don't sleep well, I wee alot more at these times, I go to the toilet at least 5 times a day with loose stools but not exactly as loose as diarrhea, I'm also bloated and extremely windy and yuk yuk yuk. (apologise for the crude truth) I'm on antidepressants since December which I find has helped me not be as anxious as I was but still. I was also diagnosed with IBS many years ago and keep been told all these symptoms is just IBS. Now after wanting to have this suffering end and to start feeling human again I'm desperate for answers. Or is this all in my head. Also my iron level is usually on the low side. Hoping I've added all I can to help someone give me some light to my situation please please please please.

gr8kids Tue 11-Sep-12 08:53:28

bump please

Lozislovely Tue 11-Sep-12 09:16:57

Sounds just like me. I'm seeing a gynae consultant this Thursday as I'm convinced I have endo. Same symptoms as you since about 18 months ago. Ibs since 16, worse when stressed but also have anxiety so on ADs.

Sick to the back teeth of it, doc suggested 'trying' to put up with it but I ended up going back and telling her what I thought was wrong with me.

Not a lot of help to you blush, but just wanted you to know you're not alone.

I'm hoping I get put forward for a lap and they actually find something. If not I think I'll be asking for a total hysterectomy as I don't want to be like this for the next 15 or so years.

marriednotdead Tue 11-Sep-12 09:22:29

It all sounds a lot for one person to deal with and the lack of proper diagnosis is hardest IMO. I'm not surprised you're on antidepressants and I'm glad they're helping a bit:

Endometriosis is notoriously difficult to diagnose, even with surgery it took almost 20 years after my first laparoscopy to agree that's what I'd had all along.
Endo and IBS seem to come as a very cruel double act.
I can only tell you what I have found helpful.

After my IBS diagnosis, I was given Mebeverine and sent on my way. They didn't make enough of a difference for my liking so I started changing my diet. The biggest improvement for me came when I switched to Lactofree dairy products, and later when I stopped eating bread/yeast products. I've come to realise that a high fibre diet doesn't suit me at all, so I avoid traditional 'windy' food such as onions, cabbage, beans and unpeeled fruit. I'm aware that the combination of my diet and the speed at which food passes through me means that I probably don't get enough nutrients so I take a multi vitamin and mineral supplement.

I try not to take on too much- stress doesn't help and I take the occasional Nytol when the insomnia gets too much.

I'm a bit older than you so the night sweats and insomnia can be attributed to my menopause. It started when I was 41 so don't discount having your hormones checked.

I don't know if anything I've written is useful to you but if nothing else, you are not alone! Take care and feel free to ask me anything else.

AttilaTheMeerkat Tue 11-Sep-12 09:36:22

Some women who are diagnosed with IBS actually have endometriosis instead. These deposits can get onto and into the intestines causing pain and discomfort.

Endo can also cause heavy bleeding to arise. I do not think the surgeon was skilled enough to spot the endo (it can be in many forms and is not easy to spot sometimes). It often requires a gynae specialist who has an interest in endo to receive good treatment results.

I would urge you to get the GP to refer you to a gynae specialist who has a particular interest in endo. You cannot just see any old gynae in such cases.

gr8kids Tue 11-Sep-12 17:50:12

Thank you ladies. Feeling so crap right know and am so desperate for a solution. Just want to feel normal. It can't all be in my head, i feel as though Im losing my mind with this happening every couple me weeks. My mum had loads of problems with her ovaries and at 32 she had to have a full hysterectomy. Sometimes i wonder if that could be the answer but i doubt it cause i have issues linking with my bowels so ripping it all out probably wouldn't help sad

cocolepew Tue 11-Sep-12 17:57:55

I had an eblation 4 years ago and started to get more problems around November last year. The lining starts to grow back after 3 years and I ended up with Adenomyosis, which is endo in the wall of your womb. I had an MRI which picked up a lot of old endo scarring , even though I had never been diagnosed with it. I have had a lot if bowel problems over the years.

I had a full hystrectomy 2 weeks ago and the surgeon said my womb was very scarred.

Definitely ask for a gynae referral.

cocolepew Tue 11-Sep-12 17:59:10

If you have endo on your bowel the surgeon will be able to remove it.

littleducks Tue 11-Sep-12 18:04:36

I'm similar. Bleeding for up to 3 months sad at times.

I was diagnosed with PCOS. Not sure if that's the correct diagnosis but I'm sure that it is hormone related too. Used to be very skinny but am now fatter, grumpier, lethargic sadsadsad

cocolepew Tue 11-Sep-12 18:11:44

Littleducks, try a low GI diet for PCOS. It's very common to have insulin resistance with it, it means you aren't converting sugar properly and causes weight gain and tiredness.

HerbWoman Tue 11-Sep-12 19:56:16

I was also going to suggest cutting out gluten and seeing if there is improvement. I also keep popping up on various threads and suggesting a paleo diet (yes, I'm getting a bit repetitive) but I know several people who have benefitted with bowel problems, periods and rheumatoid arthritis after trying it. It would also probably help to cut out all sugar, which also can cause inflammation.

gr8kids Wed 12-Sep-12 14:11:39

Strangely enough though the doc has in between all this also said I have a gluten intolerance so I don't really eat gluten and I try stick to things I know don't hurt my belly. My mum also has a stoma now and has colitis. She too suffered with both gynae and bowel problems. Not looking at it as been passed onto me but doctors do mention that family history can play a big part.

Last night and today I am in so much pain. This week I am ment to be bleeding now obviously I don't really bleed it's very light spotting. But it seems every month it gets worse. I've not had it this bad till this month. It feels as though I have pressure in my vagina and that my insides want to come out, sort of like contractions. What the hell is going on with me. I take paracetomal to ease the pain, which it does do for a few hours and then I feel as though my whole body as been battered I ache all over. Not right seriously, I have to be losing my mind.

gr8kids Wed 12-Sep-12 17:45:35


Lozislovely Thu 13-Sep-12 15:29:51

Hi gr8t, wanted to be able to offer some support but I've just come back from my gynae appt, full of hope when I went in to be told that he thinks it's muscular!!! Gave him all my symptoms, he checked my stomach (no internal tho) and suggested I do abdominal exercises for 6 weeks to see if it helps!!!!

I am so deflated right now. I cannot see how it can be muscular but have no choice but to try the exercises for 6 weeks and go back again.

He said that as I only spot and don't have a full period suggests that it can't be endo - wtf - what about all the other symptoms.

Sorry for the rant, just needed to get it out blush

gr8kids Thu 13-Sep-12 20:07:41

Oh Lozi, I really do feel your pain. Seriously wtf is your doctor on???? way. Btw I'm a sports massage therapist and would honestly say that if it was muscular you would not be having all these symptoms. I reckon you definitely need to get a second opinion. Keep your chin up babe, you will get an answer to what the problem is, just keep pushing for it.

Let us know how you get on. Big hugs to you smile

Lozislovely Thu 13-Sep-12 20:25:11

Thanks gr8 grin

I came out of there wanting to cry - I've never been a hypochondriac and waited for months before going to the GP.

I'm now thinking that I'll show that god darn consultant a thing or two and will do 10 sit ups a day for the next six weeks and know that I will be able to look him in the eye and tell him the pain is still there. I was running regularly last year (til a bout of sciatica) and that never made the pain any lesser as well as Pilates a couple of times a week. I shall be going back with my head held high in 6 weeks time and hope that he actually listens this time!

How are you doing?????

gr8kids Thu 13-Sep-12 20:34:13

Anytime Lozi.

That sounds like a plan, go girl. He will look like a fool then after all the no care attittude he gave you. Just remember though I too had a lap but nothing was found and I've read that this does happen so you need to keep pushing. At the end of the day it's your body and you know what you feeling.

I've been crap this week but tonight it feels like it's getting a bit better. That's how it goes for me. It's about every 2 weeks my body goes mad and a hysterectomy sounds appealing to me. As you I am fed up of feeling this way and feel like I'm losing my mind.

It has to get sorted hey, one way or another. grin

littleducks Thu 13-Sep-12 20:42:30

Sometimes the gynae appointments just don't help. I went after having constant heavy bleeding for months, clots and everything. I was flooding and bleeding all ovr my clothes.

The dr said I was too fat and should try and loose weight. There was some truth in that I agree but wtf the bleeding was stopping me living any kind iof life let aling exercising. I couldn't exactly go swimming or to the gym, I had to quit my aerobics class because I couldn't bear the thought of bleeding all over their floor. I literally ran out crying.

In the end I had some polyps removed which stopped the bleeding for a year or so.

Lozislovely Thu 13-Sep-12 20:58:59

I would love a hysterectomy. Started my periods when I was 10, now 38 and I've just had enough.

Like you gr8, I can go from intense pain to almost nothing and with no apparent reason but I know that give or take a couple of days it will be back.

As you say, got to keep going and just hope for answers. I've been on the endo uk website and the pain and suffering that people go through is just awful.

Lozislovely Thu 13-Sep-12 21:02:12

Oh little, that's awful. I don't know whether it's the gynae's just trying to fob us off.

I've always been a bit overweight (about a stone) but remembering back to when I was a 'normal weight' teenager, even puking green sick (tmi blush) and going through pads every half an hour the doctors didn't do a thing.

I'm considering joining Bupa through work as a last resort if I don't get any joy when I go back. I just can't see why painkillers and suffering should be the answer.

gr8kids Sun 16-Sep-12 20:57:23

Not happy. Don't understand what's going on with me. Usually my pain does ease off and some days i don't feel too bad. But this week the pain i had was worse and different and now its there again. Feels like my ovaries are been squeezed both left and right. Also have had a pain run from my left ovary down my thigh.. All this pain is a dull ache. Hate moaning like this and it feels like its constantly. Maybe l i need to let the doc know. Or what!?

Lozislovely Sun 16-Sep-12 21:27:11

Back to the docs young lady wink

You've given me some good advice gr8 so now it's my turn - don't put up with the pain. I am convinced that my thigh pain is due to the ovary pain (even tho the gynae didn't agree). Keep badgering the GP, it's the only way.

I've just restarted couch to 5k today and done some stomach exercises. When I go back to the gynae in 6 weeks time I KNOW I'll be able to look him in the eye and tell him i've done what he asked but am still in pain.

The time has come to be a nuisance! grin

SirGOLDBoobs Sun 16-Sep-12 21:29:15

I have Poly Cystic Ovary Syndrome, and have all of what you're describing. Ask to be tested - its just a blood test.

NeedToSleepZZZ Sun 16-Sep-12 21:30:13

I'm so sorry for all of you with such pain on here but glad I found you as I've been having terrible problems since having ds 19months ago. I get such heavy periods that it sounds like I'm weeing when I sit on the loo and the pain is so bad it leaves me doubled over doing breathing exercises I did in labour. I also get ridiculous diarrhea for about the first three days of my period. Ibuprofen does help but not with the nausea and diarrhea though.

I finally got the courage to see my gp about it and I have a scan on weds to see what's going on. I'm definitely with those of you who say you'd be happy to have a hysterectomy, I'm only 34 and the thought of another possible 15 years of this is so frightening.

I really hope we can all find some answers and proper treatment. Can I ask (bit personal) if you have pain after sex? I've almost stopped doing it because it hurts so much after.

gr8kids Sun 16-Sep-12 21:55:20

Yes i will definitely phone doc tomorrow. Feel like crying. I really thought that tonight i could enjoy a film and intimacy with hubby. I've taken paracetomal over an hour ago now and pain has hardly eased. Surely of the scans, endometrial ablation and lap I've had done they would of seen that i have poly cys? I don't want to go through this crap anymore. As for sex well, we try not do penetration as this is uncomfortable for me. But honestly that's only because we've thought that Im a bit tight and that's why its uncomfortable for me.

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