well finally day arrived to see gynae...first thing was my consultant wasn't there so saw a lady. Told me that scan and bloods showed no sign of endo, and as zoladex hadn't worked was sure it can't be endo. Suggested I went back to gp to be referred elsewhere...at which point I burst into tears and said I was convinced it was endo as is gp. She then tried to put me off having lap but finally got her to agree. Consent filled in...have to now wait for my consultant to agree and go on waiting list for however long. In the meantime I am meant to continue in permanent agony...currently on 6 tramadol and 4 naproxen a day...none of which work.
Know I should be pleased but still feel fed up.
This has been going on for over 4 years...
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livibean
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I really do feel for you, all my tests, scans were fine, i was in pain, and they have told me that everything was in my head. Finally did the lap found some endo, but I continued with the same pain, they told me again that it was in my head.
Went for a second opinion in another endo gynae and he finally gave me the diagnosis that the endo has not been removed (he checked all the pics of the lap)...got third opinion that verified that endo was not removed properly....
I'm so angry at my first gynae , I went through surgery and I will have to have another one soon cause if his messy job.....
What they told you (that if zoladex doesnt work you dont have endo) is so wrong, cause evey woman reacts different in drugs, I tried hormone therapy too, but it gave me terrible side effects and no pain relief so i stopped them. and I do have endo!!!
Find if you can another endo gynae, if you can afford it go private and take it from there.
One more thing, why dont you consider acupuncture or meditation/yoga for pain relief, cause tramadol is a a proper drug with addiction as it has opium and it messes with your brain.
You should discuss this with your gp and gynae. I refused to take these pills, I need to have my head clear to make decisions right, plus my gynae is very against them too.
Your key to proper treatment is to make sure ur consultant is a endo specialist.... not just a regular gyni who has a interest in endo. These do not remove endo deposits properly..
I would recommend acupunture it's really good for pain... Chinese herbalist ones are the best!!!!
Hang in there I know is tough and being in constant pain isn't good ...
I so hope your get the correct treatment know xxxx
Firstly Endo does not show up on scans or blood tests the only way to find Endo is via Lap so u really need to find a different gynea preferably a specialist as u will be in better hands, im sorry u went through that, I've been on zoladex 3 times the last 2 didn't work! So everyone is different, where r u located?? I can see if there's a specialist near u if u like? Xx
Livibean, I'm so sorry you've been treated like this, I've seen two gynaes one of which told it was all 'thyroid trouble' and that I was 'too young to have endo' I was 21 at the time. I moved and finally got a new GP and new consultant who did a laparoscopy in April this year.
In my opinion, the laparoscopy is the best way forward it either confirms it or totally denies it, to a point.
I agree with Emma above endometriosis does not show up on scans or blood tests, I think it is *sometimes* visible on trans-vaginal scans, but even then it might not.
I hope you get to the bottom of this and start feeling a lot better soon. Where about do you live? Could you ask to be referred to another hospital? I got my laparoscopy faster because I was in so much pain, I got put it as an emergency, and you could ring your consultants’ secretary and see if, due to the pain, they could speed it up.
This story is all too familiar and leaves women in pain, confused, angry and going round in circles.
amongst years of various investigations and operations. I can confirm because I have personally experienced this. Endo can show up on scans as it did with me BUT not unless their are clumps of it the density is what shows. If you have widespread or smaller deposits they are less easy to see on scans. However, laparoscopy is the only reliable tool to obtain a definite diagnosis. When they saw on the scan I had deposits of endo they decided to do a lap. Then when they did the laparoscopy together with a hysteroscopy they found extensive endometriosis together with adhesions (scar tissue) from previous ops that had fused my previously removed fallopian tube stump to bowel and adhered the other side too, plus endo and adhesions round my belly button.
A day case ended up being several days in hospital as they had to do a bigger op and remove as much as they could. However, being close proximity to bowel I gathered from how they worded it they were not 100 per cent sure they had removed every last bit. They are always dubious about endo or adhesions on the bowel because of the risk of perforation. I felt loads better afterwards although it was a very painful recovery, however pain crept back. Tried Zoladex and it didn't work and I was told that this indicated that my pain was more likely to be adhesions as Zoladex causes oestrogen to drop like a stone (as you are put into instant menopause) oestrogen feeds endo.
The belief is Zoladex stops endo spreading by starving it of its food - oestrogen! So they believe that if Zoladex isn't working it has to be adhesions (scar tissue). However, strangely endo can grow it's own nerve supply so that in itself can cause pain. It is a hugely confusing and painful condition.
They are always reluctant to do more pelvic surgery on women with endo or/and adhesions
(they often go hand in hand) because they now know that each surgery increases scar tissue
and has the potential to make matters worse! They used to do Hysterectomies as routine but they are now tending to use this as a last result as more surgery risks more adhesions and so it goes on!
This is why us poor sufferers go round in circles and still have to live with often debilitating pain
and discomfort and frankly few Gps know what to do next but know that sending you off for surgery is an adhesion risk. They of course do refer patients for surgery but now they are definitely more reluctant and want to try other avenues and use it as a last resort. They often use Zoladex earlier in the diagnosis than they used to avoiding surgery to try and get an idea if it is more likely endo or adhesions. If you have had previous surgery they tend to think you probably have scar tissue
which can tether to other organs like glue and cause pinching and pulling, low back pain, painful periods and bowel and bladder problems. Anyway your story is all to familiar. I would still say push for the lap which is less invasive as it is keyhole and less although not totally risk free for causing adhesions but far better than open surgery. That will probably indicate what the problem is once and for all, then comes decisions on how best to deal with it if you do have endo or adhesions.
Absolutely definitely get a endo/adhesion specialist Gyne right from the start. I really believe my problems were worsened because I didn't. I don't blame the surgeons they did their best but we now have the knowledge which is 'dealing with complex endo and adhesions is best performed by a specialist in that field'. A specialist will handle your internal organs delicately 'key in helping to prevent adhesion related problems' and not let them dry out (which can cause sticky inflammed scar tissue). Very important is the adhesion barrier method they use. The best one on the market is not used by the NHS for finance reasons! This was confirmed to me at a meeting for endo support by a endo specialist surgeon! However, this is a false economy as if a sufferer has to keep coming back and has to live unnecessarily in pain then it costs more downline. Getting every single bit of the endo out is key too. Endo can get into the pouch of douglas which is an awkward place for surgeons to attempt to remove it. An experienced endo/adhesions specialist gyne is the best person for the job without a doubt.
I hope you are having an OK day today, I know what it is like to be in constant pain I have felt like this since November 2011 when I had my lap which diagnosed Endo. After that I was still in pain and got told it was just my recovery from my surgery.
I have also been told it is all in my head and I must be mad, the maddening thing is you do begin to think you are mad which makes you feel completely lost with no one you can talk to.
If you ever need someone to talk to give me a message.
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