Left very confused and worried! - Endometriosis UK

Endometriosis UK

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Left very confused and worried!

BeckyR84 profile image

Hi everyone, I had an appointment yesterday with the gynaecologist and they have said if I had endometriosis it would definitely have been found back in February when I had my first Laparoscopy which was carried out by one of the most experienced endo specialists in the area. The gynaecologist I am now seeing is at another hospital as it was where I had been previously admitted for pain. They have said to me they will carry out another laparoscopy just for my peace of mind and for me to finally believe I don't have endo, they also said whilst I'm under they will insert the coil. My pain has got increasingly worse since my last laparoscopy and I am now on morphine patches and liquid morphine when needed to keep on top of the pain. I do want to have a 2nd exploratory laparoscopy because I still believe deep down I do have endometriosis and that it has just been missed. The doctor really scared me though with the worry of possible complications, she said to me that if they happen to catch my bowel during the operation which is very possible as they have had it happen several times at that hospital I could end up with a bag! I understand they have to make you aware of possible risks and complications but I feel she went to far with the possibility of it happening, she has also put doubt in my head about the surgeon if this has happened often at this hospital. Can anyone give me some advice or opinions on this because I don't know whether I should just try to get referred back to the original surgeon who carried out the laparoscopy or whether I should just avoid the operation all together but then never know if I could have had a diagnosis. I am still sick to death of hearing that some people just feel pain for no reason or that it could be IBS or that it is stress related, I know my body and I know how much I am suffering! Like I would actually choose to be in pain and live my life drugged up to the eye balls. Thanks x

14 Replies

Hi Becky, sorry your suffering and on top if that dealing with health care professional that are not acting professional,

It's possible that they have missed something, have you had a MRI scan and a examination up front and rear at same time,

Also have they checked for adenomyosis, and pelvic congestion???

Good luck and keep us posted, x

BeckyR84 profile image
BeckyR84 in reply to Tboag

Hi tboag, I have had an MRI and a CT scan but I haven't had an examination up the front and behind at the same time, separate occasions but not together x

Is the surgeon for the second operation more qualified or experienced than the first guy? If not do not see the point of this operation. Was the first surgeon from a BSGE centre? If he is you may have to push to see the president of the BSGE to get a more qualified evaluation. Did they mention any other causes for your pain?

BeckyR84 profile image
BeckyR84 in reply to Stellauk

Yes it believe the surgeon who carried out the laparoscopy back in February was from a bsge centre. I have had test after test, bowel examinations even a colonoscopy and I have had an MRI and a CT scan also.

Stellauk profile image
Stellauk in reply to BeckyR84

Could you have another consultation with the first surgeon again and find out what other possibilities / referral for further investigation? Endometriosis can cause severe pain but other conditions can cause pain too. Is it worth to explore other possibilities? Can you be treated at the chronic pain clinic?

A colleague had severe chronic pain . She had endometriosis operation but her pain only went after pelvis physiotherapy and diet changes.

Surgeon offers your surgeries not solutions.

Sometimes endometriosis can actually hide in tissues.

For example if it grows on an organ over time that organ will start to cover it up with scar tissue till it no longer appears to the naked eye.

Did they take biopsies of your ovaries, the king of your stomach, or just anything to see if anything was causing the pain?

Your story sounds so similar to mine! I really feel for you. It also sounds like they are trying to put you off of a second lap and talk you out of it. I'm unsure how it's commonplace for them to catch patients bowels when operating - they don't sound very skilled!! I know you said the specialist was experienced, but were you under a BSGE specialist or were you just told they were experienced with endo? One of the previous hospitals I was under wasn't a specialist hospital however I was told the Gynaecologist I saw there specialised in endo - and she was clueless!

Feel free to message me if you need someone to talk/rant tolovely x

BeckyR84 profile image
BeckyR84 in reply to Chinaxo

I was informed by the doctor I saw yesterday that the man who carried out the laparoscopy in Feb was one of the best most skilled around and if it was going to be found by anyone it would have been him.

Chinaxo profile image
Chinaxo in reply to BeckyR84

I don't believe that I think that's a cop out. I'd push for a second opinion, people don't feel pain for no reason.

Hi, sorry to hear about that. Have you also had your back checked with the MRI ? And seen a physio for pelvis adjustment? I am asking as I live with both endo / probably adeno and endo on bowel and also severe (diagnosed) spinal issues. The only way I can tell some of my endo symptoms from the other things - pelvis, bladder/ bowel issues, back pain, leg pain, is that it comes at a certain point in (pill) cycle and it comes with the crushing fatigue. I can recomend getting on with some active pain management support for whatever it might be so you can maximise quality of life and still having a life.

I have found for myself, surgeries are often scarier when your not certain of having them. Yes they do always come with risks but if your quality of life is already suffering severly that is a risk to weigh up too. If you have researched the surgeon and feel it is right for you, have support in your life for recovering, its all you can do. On the other hand, if you can have more painless imagry that is always great. It sounds like they are being a bit patronizing of you knowing your own body. Have they also tested for things like fibromyalgia points? Often chronic pain is multiple conditions not just one. Good luck with it all & with your journey in pain management too.

Hope264 profile image
Hope264 in reply to Hope264

Hi again. Just a thought - have you been able to go through a copy of your first surgical report to go through with your GP? then you could get an idea of whether areas that can get missed were visualised such as the pouch of douglas.

Endo is hard to see sometimes with a laparoscopy as it hides under other organs. However it could be scar tissue as well and not endo at all. I have endo compiled by fibroids, atrophied uterus and major scar tissue from previous surgeries and cysts. Just had hysterectomy and surgeon said there was lots of scar tissue around my ovary that attached to my bowel which was what was causing my pain similar to what you describe.

Hi. Sorry to hear you're having a bad time.

I've had a similar experience. I was told that I didn't have endo after a lap despite suffering in pain for a decade. I had a coil fitted during the lap. When it comes to the coil I would recommend giving it some real thought. I've really struggled with mine. Side effects for me have included daily migraines, discharge, acne and crazy bleeding! I've asked time and again for it to be removed but have been refused. Before the fitting I was told I could have it removed at any time but now I'm told it can't be removed until the 12 month point.

I can't see any harm in having a second lap. Endo can be microscopic. No one knows your symptoms better than you and doctors have a habit of getting stuck in a certain mindset - it doesn't mean they're right.

I would treat it as if it is endo anyway. Have you tried all the normal treatments i.e contraceptives? Xxx

Hi sorry I know this is an old post but did you ever find out why you still had pain? Just asking as I am in a similar position. However I think mine is due to adhesions

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