IBS, Endometriosis or what????

[gr8kids]

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.

SirGOLDBoobs, would doc not have spotted COS when I had ablation and lap done?

bump please

Hi gr8, how you doing?

I had my scan this afternoon and the radiologist was great, she said that my ovaries looked fine but that endo was notoriously difficult to pick up and that there are two types not sure what that means I did have some pain when she looked at my right ovary though, strange. Oh and my uterus did a little 'flip' whilst she was prodding away, I didn't know that could happen!

gr8kids, LozisLovely and Need to sleep,

My extensive endometriosis was never picked up on scans as the deposits are very small.

I also have PCOS (and this has never caused me problems with pain. However, my fertility was and remains affected though due to the cystic follicles on the ovaries for which I needed diathermy surgery - the endo was also lasered off at the same time). It can affect the ovaries, intestines, bladder, rectum and pouch of douglas as well as the uterine cavity.

I also used to bleed very heavily and had pain leading up to and during menses. I did not have a cycle to speak of but when I did bleed - yikes!!. Infact I had most of the classic symptoms associated with this disease, I realize this now. My teens and 20s were horrendous menses wise and I had problems with pain since starting menses at 14.

Painful sex is also very indicative of endometriosis being present. Infact if this is mentioned endo should always be suspected.

I would suggest you each try and find a consultant gynae with a specialist interest in endo (ask them outright about this), you need to see such a person rather than a gynae with some generalised knowledge which may not be up to date either.

Needtosleep - this person may have also been referring to adenomyosis but that and endometriosis are not directly connected.

www.endo.org.uk is a good website.

You will need to be persistant in order to get answers.

Good luck to you all.

Attila, that site is fantastic, thank you

I was pain free for the past couple of days but it's letting me know it's def still there today and the dragging pain down my thighs is really getting me down.

If on my second appointment with the 'useless' gynae he refuses a lap, what chance would I have of getting a second opinion??? I pretty much had to tell my GP that I thought it was endo as I don't have all the typical symptoms and she seemed to not be overly concerned.

Gr8, did you get back to the GP?

Need - what are your next steps now you've had the scan? My scan showed nothing out of the ordinary and when I went back to the GP, it was suggested I try to put up with the pain. I really can't see how up to 8 painkillers a day is the answer!!!!!!

Thank you for the info attila, interesting what you say about sex as didn't know that but it's a definite yes for me.

Loz, I have to wait for my gp to give me a call, the radiologist said there are other tests to try so I assume I'll either be offered them or ask for them. I am lucky in that I have a great relationship with my gp, he's very good at his job and always makes time for you which is rare nowadays.

Hope gr8 is okay.

I think I forgot to say also that because I'm in Gibraltar where my husband is based (army) we don't have specialists here we can see only the doctor. So anything beyond what a doctor can do has to be refferred to UK. I know how silly is that. So obviously with me going back and forth to the doctor over here I have now been reffered to the gynae in Gloucester hospital where I had the ablation done 3 year ago. I have a date now which is 6 November, yes still a while to go but they don't class me as urgent so I have to wait my turn but at least I'm been seen. But now that's only the beginning of a long road for me as I need to be prepared as to what to do/ask this gynae when I go???? I want to be able to request tests or something in order for them to check me out thoroughly so that I can get this sorted once and for all. Or I swear down I will insist on a full hysterectomy. Please ladies how do I go about preparing for this appointment???

Ps. My pain has eased a little over past two days now. But when I do have the pain it seems to still feel as before where my ovaries are been squeezed and pain down my thigh from abdomen on left side. So strange this pain. And just to be clear I do not have my appendix anymore either. Gosh I seriously wish I had xray vision so I could see what the hell is going on inside. I feel quite run down. I do push myself to go running but haven't been able to past week. How are you ladies doing?

Bump

gr8kids,

From re-reading your initial post I think they also did procedures back to front and the lap was not thorough enough. Endo if it is there can present in different forms and sites and it would not surprise me if they missed it. I would not rule out endometriosis here as a possible cause for all your symptoms now. It sounds awfully familiar to me.

If penetrative sex is painful as well this is very suggestive of endo being present.

IBS is often mistaken for endo as well. There are many women who have been told they have IBS when infact endo is responsible. (Infact a GP I once saw stated that IBS does not exist!).

I would ask the gynae when you see this person straight out how much experience he has had in dealing with endo cases and how up to date his knowledge is. You do not want any general gynae dealing with this; you need a cons gynae with a specialist interest in endometriosis. You need to find that person to get the best outcome for your case.

In the meantime as well keep a daily pain and symptom diary; this will also give the gynae clues as to what is happening as well.

www.endo.org.uk is a useful website.

Hi Last Thursday and in June last year I had keyhole surgery to remove an ovarian cyst and last week my left ovary was removed aswell. The surgeon found endometriosis present in each case and this was ablated at the same time.

I don't know if this helps at all but if any of you live in the Brighton area, the surgeon who performed my op specialises in endometriosis and keyhole surgery. His name is Mr James English and he practices at the Royal Sussex Hospital, Eastern Road, Brighton.

Thank you ladies. Yes keeping a diary is a good idea. I wish so much that I could fast forward all this prodding and poking and get it sorted RIGHT NOW!!!! I will push to see someone who knows what they on about. I have to get to the bottom of this soon.

Hi gr8, omg I get the thigh pain! Like you my pain has subsided the past few days but I know it will be back before long.

I second keeping a diary and also make a note of all your symptoms, endo related or not. I started mine when I got my appt letter and found it useful to refer to when I saw the gynae especially when he looked at me like I was making it up.

November will be here before you know it even if it doesn't feel like it right now!

Thank you. The endo site is very helpful. End of the day I just need to know whats wrong with me. This seriously can't be all in my head.

So I have an appointment with the gynae on 14 Nov which can't come fast enough. In the mean time I am keeping a diary of everything going on with me so I can show him and go from there. But today I had to see a locam doctor to get a repeat prescription on my fluoxotine....and this doctor decides to tell me that if i take the contraceptive pill it will help with my endo. Now unless I'm losing the plot, I didn't realise I actually have endo and how can this pill help me when I have tried it before with no luck. Can anybody please tell me what they think???

bump

all these posts so resound with me :( :)! I"ve been suffering since early days and now aged 45 after a long wait to see a gyn specialist I'm potentially on the way to a hysterectomy.

All they symptoms described sound so much like what I"ve been through, including the 'it's only IBS', 'it's in your head' etc.
But the specialist I'm seeing now is 98% certain I've got endo (and potentially fibroids) just based my symptoms.

She also explained that if adhesions have formed along the bladder and/or bowls due to the constant inflammatory state of the 'system', it's very likely to present as IBS, given that if one thing moves, e.g. during sex, everything gets jiggled around and keeps irritating it for a while. She was pretty graphic about certain things, but I love that about her.

So ladies, don't give up, keep persevering and you might find a doc who actually cares that you're tired of being in pain, tired, bleading out, bloated, heavy feeling etc.

I'm in the dilemma whether to do 'just' a clean up followed by hormone treatment or have the whole offending structure annihilated...

and I just saw the dates on the threat, uppos 2 years too late! but hope everybody on here is feeling better!