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Endometriosis UK
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not endo, where to go now?

I had my lap yesterday & the doctor/surgeon said it isn't endo despite having practically all the symptoms.

I'm confused & not sure where to go now, help?

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bump.

anyone got any ideas/suggestions?

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Hi have you tried intolerance testing. I had it done 3 weeks ago & cut out everything I had an intolerance to (wheat, rye, soya, 5 E numbers & numerous alcoholic drinks). My symptoms pain, bloating etc have all but gone and I've lost 4 pounds.

Last appointment doc said to try the coil again, it's my 3rd, for 6 months before she'd give me another lap. Wondering if I will need it now and if it was endo causing my problems or the food intolerances?!?

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I'm in the same boat. Had a lap in march and they found no endo got put on anti-inflammatory tablets which helped a little but still get the same agonising pain went to the doctors today and they offered me to go back on a pill(tried three an they haven't worked) and have been offered to get either the mirena coil or contraceptive injections.

It's disheartening when they don't know what's wrong with you.

I also have food allergies intolerences and the pain from the intolerances is different from the severe pain i get.

I hope you get it all sorted xx

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It is so disheartening. At times I've felt like I'm going mad & it's a physciatrist I need not a gyne. I'm only 3 weeks in to my exclusion diet so it's prob too early to tell. The pain came back for the last 2 days & I'm not sure if it's constipation or ovulation. Out of interest you say the pains are different. In what way? X

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I sometimes wonder if the pain is brought on by my thinking i'll be in pain during my periods, so like i expect it so i get it but then the pain is so bad that i know it isn't all in my head.

The pain from the food is pretty sore and i have to lie down, and squirm, till they go away. Also the pain from the food is above my belly button and below my ribs whereas the other pain is more where my hip bones are, below my belly button.

But the other pain is an agonizing pain in which it takes hours to ease off, i am sick with the pain, I get diarrhea and almost feel as though my heart can't take the pain. Causing a rise in my temperature but feeling cold, going chalk white and just feeling constantly drained.

All of the options the doctors have given me aren't a cure and will just mask the symptoms but i'm not entirely sure i just want it masked, i don't want to know that i may or may not get the pain each month, I want to know i am free from pain and cured.

Yesterday at the doctors surgery i got told, again, that the pain should die down after having children, so does she want me to get pregnant to save the nhs money? Ha ha.

Giving me all of these different pills are causing the nhs more money, would it not make sense to just figure out once and for all what is wrong with me and sort it rather than having to go back and forward?

I live in Scotland so I don't pay for prescriptions and I work so pay taxes but still i would prefer if they could sort it rather than mask it.

What kind of pains do you get and what region do you get them in, if you don't mind me asking. xx

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I agree totally with what you are saying. I don't want to be on painkillers constantly & would rather get to the route of it. I also live in Scotland. I am 38 an have no desire to have children also it is not possible for me to have kids as my partner has had a vesctomy. I hate when they say that it's up to each individual when & if they want kids.

My pain is always in the same place. Right side just a few inches in from my hip & lower down just above my pubic area. I get shooting pains down my anus & vagina not all the time but often. Sometimes the pain is sharp stabbing like cramping & other times it's dull aching.

I hate to say this but have you had your bowel checked? Some of the symptoms you discribe sound like chrones. Don't mean to scare you. Maybe worth a test. X

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Your pain sounds, to me, I'm not a doctor though, less like a food intolerance but obviously I am not a medical professional.

After my laparoscopy in March at Ninewells the surgeon had suggested that it could be something to do with my bowel but I only have those complications during my period, when I don't have my period the pain only niggles and (not to sound disgusting) my bowel movements are regular and fine.

The doctor said there was probably no point in sending me back to the gyno as there may not be anything else they would do.

I know every person is different but you see on here all the time that many women go through multiple laparoscopies and no endo is found in the first few and then all of a sudden it's found during another lap.

Wish there was an easier way to find out what is causing people pain. X

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I was never sure whether it was food or the endo. By eliminating my intolerance foods I have found a marked improvement in my pain.

I was diagnosed in pri after a lap in 2011 & whilst my pain & associated symptoms reduced it never went away. The last year I have been suffering quite bad. I did the intolerance testing just to see if there was anything. I'm glad I did.

I also have bowel problems during ovulation & my period. Other times it works fine but I was still in pain.

Out of interest how did u see at ninewells? I've had 2 consults at pri & 1 at ninewells. X

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Ah small world, i know this sounds weird but it's nice to hear others close to Dundee have been to Ninewells about this sort of stuff.

At Ninewells I had first been sent to gyno and when I got the lap it was the same gyno that done my lap. I kind of felt that as soon as I was back on the ward and he had come to see me it was pretty much, you don't have endo if the pain persists go back to your GP it might be something to do with possible IBS, and then it was pretty much can you pee, have something to eat then off you go home without any advice about my stitches or pain or cleaning the wound.

However the food they gave me for my lunch tasted like the best food I had ever had since I hadn't eaten for 15 hours haha.

I have never had any problems with my bowels outwith during my periods.

How did you find PRI? X

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Pri was great. I had been suffering for 2 years & the consultant said right we need to take a look how about you come in next week!! He was a foreign chap & seemed to know what he was talking about. I found the whole experience at pri excellent even the nurses were great. My consult at ninewells terrible. I got a foreign lady who was shocking. Didn't listen to a word I said told me that it was all just normal because of my age. She actually said oh I won't bother sending you for a scan as you had 1 4 years ago. Wtf?? I was actually in tears she made me feel like a nuisance. Told me to take the depo & lied twice saying it wasn't the contraceptive injection. I had already explained I didn't need contraception & didn't want to take hormones as I suffer from depression.

I really wanted to see Patrick Chen as I hear he is a endo specialist x

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:-0 that's terrible!! 4 years ago, a lot can change in your body in four years!!! What an awful experience that must have been for you.

I had a foreign man, i'm not too sure what his name was I just had above my bed in the ward Mr. and his initials, can't remember what they were though.

So how many times have you been back to a gyno? Has your doctor always referred you to them or have you had to do it yourself?

See I live in Barnhill in Dundee so got put to Ninewells for the op but I had my ultra-sound done in Arbroath infirmary. x

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I lived in Perth but moved to Blairgowrie 2 years ago so not sure if it was the move that I got ninewells back in April this year or just pot luck.

My doc has always referred me I'm not sure if u can refer yourself. I was a pri in 2011 then ninewellls April then went to pri again last month. The consultant I saw said as my scan (family planning sent me for as I was so upset cause I thought there was something wrong) said that my ovaries looked fine which would mean that the endo is not severe. She said to try the coil again for 6 months before she would operate again. Not happy about it I agreed. It's my 3rd coil & it's never stopped my period before so I don't know why she thinks it will help this time. Prob just trying to save money. I really want a MRI and will ask when I go back.

I've actually said just take it all away. I don't need it or want it but if it is endo she said a hysterectomy won't cure it.

I can't tell you how many times I've been to the doc about this & the tests I've had done. I've lost count x

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I lived in Perth but moved to Blairgowrie 2 years ago so not sure if it was the move that I got ninewells back in April this year or just pot luck.

My doc has always referred me I'm not sure if u can refer yourself. I was a pri in 2011 then ninewellls April then went to pri again last month. The consultant I saw said as my scan (family planning sent me for as I was so upset cause I thought there was something wrong) said that my ovaries looked fine which would mean that the endo is not severe. She said to try the coil again for 6 months before she would operate again. Not happy about it I agreed. It's my 3rd coil & it's never stopped my period before so I don't know why she thinks it will help this time. Prob just trying to save money. I really want a MRI and will ask when I go back.

I've actually said just take it all away. I don't need it or want it but if it is endo she said a hysterectomy won't cure it.

I can't tell you how many times I've been to the doc about this & the tests I've had done. I've lost count x

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Hi, i had Dr Chen when I went for my consult last week and although he may be an endo specialist i found him awful. He was so harsh, wouldnt let me ask any questions or tell him any symptoms. I left feeling completely lost and am going to request another consult with a different Gynae.

This may just be my experience of him so I don't want to say definitley dont see him but I would not see him again.

Erin x

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If you have not yet been offered and MRI to check for adenomyosis, or have never heard of it then that is undoubtedly the nest step. The symptoms are the same as for endo, but the bleeding is hidden within te uterus muscle walls and not visible in surgery but can show up if you have an MRI scan while you are on a period or just had one.

adenomyosisadviceassociatio... is a really informative website for all things adeno and Danielle who runs that website is member of this forum too.

Please have a read of her website and if it rings rather familiar with your own experiences then that is certainly the next thing to be checking for.

Management is much the same as it is for endo. Surgery to remove (in this case a hysterectomy) and until then stopping periods or reducing the number you have each year by using hormone birth control methods is your best bet.

If you have already had an MRI for adeno and it was clear, then you do need to look also at the digestive system and find what trigger foods and drinks make pains worse and avoid them.

Trial and error in cutting things from your diet then reintroducing them couple of weeks later and recording in a diary what effect they have. If it is bad then put them on your own banned foods and drinks list. The endo diet can benefit both endo and adeno.

There is also the PCOs diet and the Coeliac diets which also deal with cutting out foods that trigger a painful gut reaction.

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I would agree with the above. However, I would also suggest that you keep a detailed diary of your symptoms for the next six months or so. It may well be that your problem is completely non endo related. However, if things persist and no other cause is found - don't be afraid to seek out a second opinion from an endo specialist ( I don't know what expertise your current consultant has). Consultants can and do miss endo. They should not but they do.

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After my first lap they said it wasn't endo, gynae said he wasn't convinced.. It took another four ops before they actually found anything so don't give up... I wish I could offer advice but as someone else said keep a detailed diary and keep pestering. It's horrible to experience all the symptoms and not have a concrete answer... Keep strong xx

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it seems too related to my period to be allergies or intolerances, IMO. I don't understand how either of those could cause pain after sex either. the pain seems to be constant & nothing seems to make it any better or worse apart from its own stupid doing. I'm considering getting a second opinion but have no idea how to go about it with the NHS, all my female family have lap diagnosed endo, I supposedly had a blood cyst on my right ovary which appears to have magically disappeared. I thought adenomyosis could be picked up by a bulky uterus through lap?

Hysteroscopy Colposcopy Advanced hysteroscopic procedures such as TCRE (Trans cervical resection of endometrium) Menstrual disorders Endometrial ablation Laparoscopic surgery Ovarian cystectomy/oophorectomy Prolapse surgery. that is the stuff my doctor specialises in which i dont think endo would fall under?

I've been in chronic pain for just short of 2 & half years, I can't be doing this any longer. I'd legitimately rather kill myself than spend the rest of my life in this pain. :/

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Just to clarify. The only absolute way that adenomyosis can be diagnosed is by tissue biopsy - though MRIs can give a reasonable indication and it should be possible for a good consultant to at least suspect it via a lap. My adenomyosis was listed as 'highly probable' after various laps and various MRIs

I'd certainly consider a second opinion. The first person who looked inside me was clueless - frighteningly so. He did identify some endo but said he did not think it was the source of my pain and that the problem was due to an ' odd growth' on my ovary (which he did not identify or biopsy). He also said that my pelvic cavity looked very 'odd.' He didn't elaborate or even treat the endo he had spotted. He used these exact words i.e. 'odd' in my medical records. He offered nothing but pain relief after the surgery. I requested a second opinion a few weeks later, as soon as I had recovered from the surgery and a few months after this had a second lap. This person diagnosed very clear Stage 4 endo with dense adhesions and said she had never come across such a severe case. She said enough to let me know that she was fairly horrified that the first guy had got the diagnosis so wrong. He basically did not understand what he was seeing and I guess just ignored it. I should have reported him really. I would not hesitate to do so these days. I had to be referred on again as the second consultant made it clear my case was beyond her expertise.

This is not to say your case would be so severe if someone had a second look. However, my case does go to show just how incompetent some consultants are.

If you want a second opinion tell your GP and/or write to your present consultant and just say very simply... 'Thank you for your findings. However, I wish to take a second opinion regarding my case and I would like to be referred to an endometriosis specialist. ' You don't have to get into a long argument with him about it. You do have the right to ask for a second opinion. Sometimes GPs will panic about sidetracking past a consultant but ultimately whether the consultant refers you or the GP - they cannot just ignore you. You're best bet is to do a bit of research about registered endo centres and perhaps ask for pm recommendations here -then you can tell your doctor where you would like to be referred.

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Hi , I paid for my daughter to get a second opinion this April after nothing was found during a lap. Last September. her symptoms fit so well and we kept reading that it often takes more than one lap to get a diagnosis we thought it would be worth seeing a consultant. The consultant we saw asked a lot of questions , then did a vaginal scan. he also said he did not think it was endo. And was confident the lap. Had been done properly as he knew the doctor who performed it well. ( he did say that had we named some other doctors he might have done the lap again himself!!! ) The cervix looked healthy. he suggested a change of pill , and attending the pain clinic. The cost was £360 . my daughter was disappointed as still no diagnosis but he did agree with us that it was not IBS as suggested by one disinterested GP. have had some support and suggestions on this site which we will follow up.

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Hi

I had a diagnostic lap last year, they found no endometriosis. Only found that my fallopian tube was attached to my bowel, I was given the option of having my fallopian tube removed, the consultant told me it would probably not make any difference to my symptoms. I opted for the removal, they found specks of endometriosis underneath the fallopian tube. So don't be disheartened that they haven't found any endo, it can be difficult to find!

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hi, I'm in Dundee too and pretty sure I have endo, I have said yes to a laparoscopy but am now unsure. Was the gynaecologist you saw at Ninewells helpful? The one I saw was awful and wouldn't let me ask any questions or tell him any of my symptoms. I'm going to try and ask to see a different consultant.

X

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