I just got back from a GP appointment, following normal blood results and a normal transabdominal and transvaginal ultrasound.
I know a normal ultrasound does not rule out endometriosis, but would rule it in if endometriomas etc were found. The GP focussed on a line in the ultrasound report that stated 'slim, regular endometrial lining' and declared that that absolutely ruled out endometriosis. I had the scan 5 days after finishing a period, of course the lining was thin?!!!
Prior to the bloods and scan, the GP had already discussed referral to a gynae and potential need for diagnostic lap. Now he would have stopped the diagnostic process at this finding alone!! Luckily, I have a medical degree and was able to discuss my understanding of endometriosis and get him to refer me. I just feel so sorry for people who do not have a medical background. You put your faith in medical professionals, which you expect to have a certain level of knowledge and competence.
Despite my medical background and textbook symptoms (chronic low-grade lumbar and pelvic pain which is much worse around ovulation and menstruation, pain on urination and bowel movements during period, blood in stools for a few days before period, diarrhoea, extreme bloating, pain during intercourse and even inserting a tampon (the transvaginal scan was NOT fun), fatigue for 3 weeks of the month (ovulation and week before and during period)) I am now questioning whether it's all in my head. I'm exhausted and in pain all the time and am finding it so hard to work. I'm quite stoic, but have been reduced to tears by this pain over the last 3 months. I am now worried that I'll go for diagnostic lap and they will find nothing...
Sorry to rant! I just feel isolated and questioning my own sanity, despite the fact I should know better.
xxxx
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squeep
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Your not alone. Keep at the doctors and push for referrals where u can.
I had this lower left side pain for month along with my ibd. At times I felt like people thought I was imagining it.
Only until in had my laparoscopy and they confirmed that I wasn't imagining the pain. I had cyst and endometriosis.
Your need to be strong firm and persistent with the doctors and specialists. And perhaps talk to someone confide in them as u defo need someone whilst going through all this.
Hi Squeep, I feel exactly the same, I go for my 1st lap on the 10th April and am a little worried incase they don't find anything, what happens then? Is it all in my head? I know it isn't as I have been reduced to tears and have all the symptoms that you have described. It just seems more real now I have a confirmed date.
Good luck and hope you get at least a few days pain free x
Thank you both! Good luck Boo! I hope it gives you answers and options.
I can see why it takes people an average of 7 years to get a diagnosis. The disease is enigmatic, the master of disguises, and even if you hand a doctor the diagnosis on a plate by tying up the symptoms in a succinct little package for them, they still don't want to know because of a clear ultrasound. Sure guys, just keep pushing the Microgynon...
My GP said there was "no evidence" I had endometriosis even though I had all the main symptoms and my mum got diagnosed at the same age. I have a biology background so I knew he could not just rule it out like that. He didnt actually know that there was an in heritability to the condition but was arrogant enough to make out that he could confidently not investigate further.
Once I had explained that yes it does run in families I insisted on a referral to an gynecologist who would actually know something about the condition (I didn't put it like that.... I was actually very polite).
Turns out that I was right and I have endometriosis, stage one.
Trust your education and your knowledge of your body, I actually got an apology from one of the other doctors due to this.
It's just crazy isn't it?! I was polite too and got the referral, but still has me questioning myself and feeling like a complete nuisance! It makes me feel like I'm being a complete drama queen. It also saddens me that such an experience is all too common.
It isn't all in your head, it is a real illness. Take no notice of this useless so called doctor. The only thing that can be in your head is a headache. If you are having your lap done with a gynea who knows what to look for then they will find endo. You have a lot of typical symptoms of endo. X
Stick to your guns. you know something is wrong and you need the right help finding out what.
Even with a clear lap op, you would still need an MRI while you were having a period, to check for adenomyosis within the muscle walls of the uterus.
It is not always possible to spot that on US scans and especially if you were scanned at the tail end of the menstrual month when the previous bleed will have dissipated and the new bleed not yet begun.
It takes guts to stand up for yourself and it does certainly help to have some background medical knowledge to help you argue your case when that is necessary.
I wish your experience with the GP was rare - but it is all too common.
A lap to diagnose is a major step in the right direction, so let's hope your gynae -when you get there- see the sense of it.
And even if it doesn't reveal endo it is onebig hurdle to naarrowing down the cause of the symptoms and it doesn't rule out endo.
Very best of luck and well done for your sound reasoning in persuading your GP to reconsider.
It has taken me a long time to post this, because I've been questioning whether I really am crazy.
I saw a consultant gynaecologist (not endo specialist). He took a full history, decided it was a clinical diagnosis of endometriosis. He then said that because of the clear ultrasound, it was obviously mild and he wants to prescribe Yasmin for 9 months with no break. He said most "unthinking" gynaecologists would want a diagnostic lap. I said I'd rather a lap (not because I love the idea of surgery) because I don't want to make symptoms and potentially find myself with adhesions and infiltration in the future (which I'm not so sure I don't already have). He said that it's mild based on the scan so cannot cause adhesions or DIE.
He then tried to do an exam and cervical smear. This was the worst pain I have ever felt, couldn't tolerate it for long enough for him to get his smear. He made me feel like a naughty child. He said "that's a little extreme don't you think". He decided I have provoked vestibulodynia as a cause of superficial dyspareunia and I need to be referred to a councillor.
So, I left in a lot of pain, questioning my sanity and feeling utterly degraded by the whole thing. I bled immediately after the exam for 24 hours. I then came on my period after 48 hours with the worst pain yet and passing huge clots 2 days after starting Yasmin.
I really don't know where to turn. Clearly some of the advice he gave was completely incorrect, he was also extremely arrogant and condescending. I will take the Yasmin, but remain concerned. Additionally, Yasmin makes me nauseous and lightheaded constantly.
At least u could back yourself up because of ur medical background apart from my dr now others just think I've googled it or say it's your pcos or ibs even been told it was colitis (sorry on spelling) I'm 38 had symtoms since 14 seen endo clinic for first time on 28th of this month! I've missed nights and days out so much time off work or struggling to cope cause employers would say its a period not a illness!!
Even family and friends looking back at sometimes I guess they though not again!! I used to horse ride met my friend set off got 1/2 mile down road and with sanitary towel on had blead everywhere over me and saddle!! (Sorry tmi) Ibs err no oh and the at many points of month massive tummy hard as a rock looking 6 months pregnant? I hope this endo dr helps me just a bit!!
Well I don't seem to have done so well backing myself up, I think I was in too much pain, shaking and bleeding heavily from the exam to do anything but agree to his rubbish plan! I really don't know what to do now!
I hope you get some help and someone takes notice Lolaloo! It's such a miserable illness, why does it take so much effort to get help?! Hugs xxxx
Due to fertility issues I have had lots if scans, bloods and examinations! Nothing pointed to endo - as my symptoms hadn't arrived yet! In October I had a routine lap and dye test and they found stage 4/5 endo! My left ovary was totally covered and fused. No internal scans had showed anything! Since diagnosis all symptoms possible have occurred and I'm usually only ok for a week during every month. Just goes to show that only a lap can really diagnose endo. Keep going back until you get it!
I feel the same, I have had normal bloods, urine and ultrasound( abdo and internal) which all came back clear. My GP just said to me that they are unable to help me any more and have either referred me to gyni or have asked for their opinion. I just want answers. I have been having severe stabbing and dull aching pain over my right ovary/ pelvic region since September. I have always had extreme period pain lasting from ovulation til some times the end of my period, heavy periods, occasional spotting. I just want to find out what is going on.
It doesn't help that I don't like showing that I am in pain so often keep it to myself, but I don't want to seem like a drama queen to. Hence why I think alot of people think it is in my head.
I am a nursing student so have some medical knowledge and have had a background in medical stuff due to my family. Me and my friends ( one of whom had a placement in gynecology) were discussing my pain the other day after our gynecology lecture and we all think that I have endometriosis. I have been passed off as having IBS but I only have one symptom, where as endometriosis i have most except for the ones that involve sex as I am still a virgin. Which is also another worry I have, as people in the past have said that maybe the pain will go once you have sex and children, which to me isn't a valid reason for my pain.
Squeep... Its disgusting how he has made you feel... Its so wrong it makes me angry!!!
Like you i keep thinking is it all in my head!!! I have had problems with bad periods, pain during sex, not being able to tolerate contraception etc. I was diagnosed with IBS as a teenager, and then in 2004 told I may have PCOS and was found to have an ectropian on my cervix. I went on to be able to have 3 children all the while the pain and bleeding continued. I separated 2 years ago and being with a new partner was difficult as the bleeding and pain was a complete turn off. I went onto the copper coil as a last ditch attempt at contraception and when that made things worse I went back to the docs. Asked to be sterilised and for my ectropian to be sorted out as it was affecting my new relationship... I was told they don't sterlise on the NHS and that there was nothing they could do for the etrophian. I too have a medical background - went in my uniform and stood my ground and told her I knew there was something that could be done. So I was referred... it was when I saw the gynea for the cervix and told him all my symptoms that he questioned endo. Had a lap last year and a small old sight of it was found on my left ovary. It was removed, cervix cortarised and i was sterilised... everything was great!
February this year I started getting the worst pains in between periods, constant back ache and burning feeling in my abdomen. pain in my abdomen when i go to the loo to defecate or urinate... i got too worried went to the gp and was told it looks like its come back and nothing more can be done!!! I was sent away on fluoxitine to help with the mood swings and hormones and put on the pill to try obliterate my cycle... as usual the pill made me ill, and i put on 1/2 a stone, the fluoxetine made me suicidal and I almost od'ed and the painkillers they gave me made me to drowsy to function... so I stopped it all. Decided to see a nutritionist who in the end basically told me i cant enjoy my food.. no wheat, no dairy, no red meat etc etc... today I woke up cried when i went to the loo and crawled onto the sofa where i could not move for a good hour... could not go into work today.
Went back to the gp in agony today and bacause she could see how sore i was has finally referred me back to the gynae... now im stressing they wont find anything. They removed it last year... how could it come back so quickly with such a vengeance... is it all in my head!! beginning to feel this is a very lonely condition... with not many around me understanding the pain and exhaustion I feel more often than not!!!
Why is not more done about this... why are we left feeling like idiots who are losing there minds! its so wrong!
Squeep, i know how you feel! I too am from a medical background as is my partner. My gp had been pretty good, trying all sorts before we went for a referral but it was when i got admitted with severe pain that the gynae discharged me with pain relief, no follow up said there's nothing wrong with your scan so the pain will settle, i pushed but still didn't get even an outpatient followup despite my reasoning. Id had enough and went private and they did a laparoscopy to found endometriosis with bowel and bladder issues too. It is very frustrating sometimes!! I hope you are getting sorted now xxx
I understand that they cannot do this surgery willy nilly on people as it is a dangerous procedure, plus it can make things worse for some people. However, GPs attitudes are awful. It's not really their place not to refer people. I was always told that I was a stupid little girl and had to do a string of STD tests at every appointment. Just a stupid slut that needed to shut up, clearly. I was only finally seen as my endo was so bad that it did show up on my scan and I needed a laparoscopy for a large cyst.
Yes, it can grow back within a year, mine only takes weeks to grow back. I would try the Yasmin, I know you are but it's important to show them faith and take all remedies seriously as you never know, you might hit upon that wonder pill that works for you. If you take it and don't find an improvement within 3 months then it's more than fair from their point of view that you request another referral. I know it sounds stupid but you have to play their game. I will try anything they give me, I'd love to find the pill/contraceptive that would give me relief. Much better than a hysterectomy before I'm 25. I like the implant as you get a lot less bleeding I find and you are constantly getting the hormone at a fixed rate. Plus if you don't like it you can remove it and it's out of your system within a week. Plus your level of endometriosis is not relevant to your pain. You could scream all day and have 1 adhesion or be full of endo and not even know it so don't panic that your body is ruined. Persevere. You're not alone and you're not crazy. Irritatingly it's a long game. Lots of love xxx
This was me last year! Seriously! Kept going back to GPs, had blood tests, examinations, swabs, given antibiotics assuming it maybe PID (don’t think so, have been with my husband 20 years, so unlikely! But they assumed this long before endo), a smear (that I paid for privately to get the results quicker because I was freaking out), more arguing with GPs, finally an U/S scan transverse and internal - both showed nothing - more arguing with GPs and finally a lap - which found I did have endo. Even 2 weeks before the op, a doctor said “Oh it’s a shame it’s come to surgery isn’t it” obviously not believing a word I’d said over the past year. Grrrrr. At the end of the day, you know your own body and like you’ve done, have to persevere. You’re not going mad, and from what you’ve said, endo looks very likely, which will at least give you an answer. Big hugs to you, the pain and tiredness is hard enough, without having to push for investigation.
I know how you feel. I only got referred to a gynaecologist the first time because I saw a male gp who had no clue, I told him about endometriosis, he googled it and then because it said on the google page if suspected it needs urgent treating he then referred me to the gynaecologist unit!
Yeah I went through 2 gynaes on the nhs with no help or anything. Finally went private and best decision ever especially with an endo specialist. Only problem is I need a lap and I’m scared of surgery
Wow just read sqeeps post and replies. What awful treatment you have received. I see several people have medical backgrounds which in my experience makes us feel like we should know better than to bother doctors ,keep apologising and try not go and see them. I often wonder if it was them or their family that were going through what you all have ,how would they feel. I do hope you are all doing well now.
♥️ Big hugs to you. I know how you feel. My husband found this for forum for me because I actually felt like I was starting to go crazy and it was all on my head. Most Dr's just don't have the patience to go through all the symptoms. You know your body better than anyone though keep pushing until you get answers xx
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Transvaginal scan normal!!!!!! 
Is my gp right? 
Can lap trigger worsening endometriosis? Or can recovery take longer than 3 months?
