I visited an Endometriosis Specialist on Friday (1st Nov), I paid privately for my first consultation because I have had an awful few months (going through IVF, then having a miscarriage and my pain being relentless) and couldn't wait until the end of December to be seen.
Anyway when I was there he asked me to describe my pain and I really struggled. I think because it is just there all the time and become a part of my norm I don't know what it feels like to tell other people if that makes sense.
I said it can vary from being round the lower half of my abdomen to the lower half of my back. I can get cramping type pain, stabbing pain where I imagine my right ovary to be. Shooting pains (up the bum and vagina) and aches and heaviness in my thighs that feel like it drags down towards my knees. But after I said it I knew there was soo much more plus I felt like I really sold myself short because that doesn't sound too bad..
So I was just wondering how you all describe your pain to medical professionals?
Thank you
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JadeH92
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Have I really? I felt like what I had described had minimised my pain. Yes I have pain with intercourse. However, not regular pain with bowel movements or passing urine but it does happen occasionally, never any bleeding though. No I was currently on my period and due to my pain levels at the time he said he didn't want to increase my pain further. He wants me to have an ultrasound, hysteroscopy and MRI before surgery. However, I will have to wait until I see him again in December to be sent for these tests as it will be on the NHS. Thanks for replying!!
I experience all of the above and you have described it well almost too well it sounded like you have taken my words. The thigh pain for me like a dull spasm like pain.x
Really that is crazy! I'm sorry you are suffering to however, without being awful (because I wouldn't wish it on anyone) it is nice to know that I am not alone. I think because over the years people have dismissed my pain, told me it wasn't there or it wasn't as bad as I was saying I think it fills you with self doubt. So the reassurance that I have explained my pain well helps. Thank you and thanks for replying x
Your not alone, if anything this forum has helped me a lot. I have learnt from real life experiences on here and know that I am not alone through the 4k members on this page at least 1 person is experiencing the same as me and if I'm lucky they are the same age as me too.
I have only got all the symptoms suddenly last yr summer and was diagnosed within 3 days of being in hospital, but I didnt rush for surgery when they had offered it to me, because the gynae specialist wasnt able to answer all my questions and left me with unanswered questions, and so I wanted to research before I let them operate me as I have not had surgery before and I was 29 only with no kids.
I then referred myself to endo specialist and discharged myself from gynae specialist. My endo specialist was able to answer all my questions and put me at ease and didn't give me answers like "no one knows endometriosis is still being researched or we are not sure"
Since having my first lap in August I get different kind of pain compare to the pain when I had endo in me. the pain are more sharp, dull like spasm like pain. Cocodamol 500mg has managed me on the more severe days.
Try and take evening primrose capsules they have also helped me a lot. 15000 unit, from holland and barrett.
Glad you have had some relief and it is really good that you go the correct treatment as soon as you did. Its positive for any new sufferers. I am taking 60mg of codeine with 1g of paracetamol up to 4 times a day at the moment but I am trying to only take it when I really have to. What does the evening primrose do? I used to take it for sore boobs but stopped before the IVF. I take strong multi-vitamins and turmeric but I have only just started taking the turmeric.
I had breast pains in january,and was referred for breast screening but it came out all clear. My doctor told me to take evening primrose as it also balances out hormone in the body, since taking them from May till now I have no pain in my ovary and no breast pains. I am trying to keep up with the rest of my vitamin d,b6,fish oil. But on the days I have all these vitamins it's good but the moment I don't take it the pain comes. I am off pain relief I have only taken cocodamol once 3 weeks ago as I had extreme stomach and pelvis pain but the moment I took one pill I was fine. So currently I am off all pain relief. x
I am actually really surprised that people are experiencing the same symptoms. Not that I thought it was only me but I thought I hadn't explained them properly or well enough. Are you on a waiting list for a general gynecologist or a endo specialist? Only because I have had surgery 4 times in the past and 2 of those surgeries was carried out by general gynecologist and 2 by someone with a bit more knowledge but still not enough. The consultant I saw on Friday told me that things could have been done to prevent adhesions and then other surgeons could have missed endometriosis and looking back now I would have rather waited to be seen by a specialist because it could have prevented being operated on all those times.
My pain starts about 3 days after my period. It will be very bad cramps which go right through to my back. Feels like its burning from the inside. I get aches and really severe at times in my left side were my bowel/ovary is. I get cramps after sex or during sex I get awful pain. Pain when opening my bowels. Stabbing pains in my vagina and my back passage. The only way I could describe the pain to my consultant was, when the pain is severe and if I were ontop of a building I'd jump of just to be rid of the pain. This is the only way I could describe it. I've been suffering for 13months and have my laparoscopy & hysteroscopy op on 6th nov.
Thank you for replying. Like I have said to others I'm sorry other people are experiencing it but it makes me feel a little less crazy. Where has your endo been when they have removed it? X
Yes you just described the pain exactly as I would. I saw an endometriosis specialist privately last year and it was such a relief. I remember thanking him for not looking at me like I had two heads 😂 because I was so used to being dismissed by doctors!
Yes it was nice when I explained about the shooting pains up the bum etc and he told me in university they would roll their eyes but over the years when he has actually seen the damage to the nerves caused by endo it has made him realise. So it is nice to be finally believed isnt it.
That sounds so horrible! I also have a really difficult time describing my pain, and I feel like drs haven't taken it seriously enough, or that I've been too vague. My regular pain is more a pressure in my entire pelvic area and lower back. This is punctured by sharp 'twisting' or scraping pains where I imagine my ovaries and fallopian tubes are - like my innards are a wet towel and muscular hands are wringing them out. I also sometimes have stabbing pain in the pelvis or upper thighs. Fortunately no shooting pains in the vagina yet!
Yes that's exactly how I felt and I think my partner could see that I felt I had sold myself short. Before we left the appointment my partner said to the Dr that I act like I am fine a lot of the time even to Drs and Nurses but I'm not and that I have just created coping mechanisms to put on a brave face. That is a really descriptive way of explaining it because I full get what you mean. Fingers crossed the shooting pains don't come and that you get some pain relief soon. Take care x
Thank you for replying. Yes I am currently taking my painkillers daily but I want to go back to work soon so I am going to have to stop. I was previously on pregabalin and amitriptyline, but I stopped these when we started trying for a family. I will have a look on that website thank you xx
I totally relate to your description of the pain. I also tell doctors that the pain is like being in labour- it’s so intense & I’m literally doubled up at times with severe lower abdominal pain & back pains. It’s hideous. I feel for all of us who suffering from this condition x
Hi luv. I'm currently waiting for some form of diagnosis after 5/6 years of pain. For me my symptoms are - very heavy clotty periods, certain sex positions I carnt do as I get a horrendous shooting pain which lasts for days after, loose bowels first day of period, a pain in womb and vagina which I can only describe as if I am getting stabbed, a heavy feeling as if something is pulling in my vagina, horric ovulation pain. I feel as when I'm asked if I blees between periods and I reply no I am dismissed. Xx
Dull ache that becomes sharp, then stabbing, then burning, then extreme itching. At its worst when bloated or needing to go toilet. Constant deep throbbing after i sneeze or cough (which makes me dread colds and hayfever for that reason alone). Can feel a pulsating pain when lying down. Sometimes pain goes down my legs and other times i feel an ache on both sides of my waist just under my ribs. Feels like I am being stabbed with hot knives, or cut by small razor blades. My insides feel like they are wrapped in barbed wire every time i get up, bend, sit down. At its most extreme, it feels like someone has poured hot boiling water on my insides. I've gone to bed crying throughout my period, especially towards the end. Why on EARTH does this pain get worse after the period stops? Nobody can tell me that. I apologise for the graphic explanation but that's how i would describe my pain. You can now imagine my doctors face when I told him all that!
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I apologise for the graphic explanation but that's how i would describe my pain. You can now imagine my doctors face when I told him all that! 
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