Endo lap clear

[HolsBamboozledwomb]

Heartbroken and lost for words, I had my lap today after tyears of period pain and the last few years being excruciating, my life has changed dramatically, I am on a major amount of pain killers and I have zero answers. I'm so upset. And all they could say was book an appointment with your GP to see a bowel specialist and pain management. When I asked why I am in so much pain, I said each flare up I check I have no UTI because that is what it feels like, like my kidneys have been kicked in. Every period. And bleeding from my back passage, only when I am on my period. How is all this explained. Sorry to whinge but I feel so let down and could do with some support. And you lovely ladies always make me feel so much less alone 🥹 xx

[AllthatGlitters]

Hi I got referred to a bowel specialist and it was this consultant who decided to put me forward for an MRI scan whereby i was diagnosed with adenomyosis. He obviously thought my symptoms were gynaecology related but never said that to me at the time. There will be a reason for your suffering. Ask for your referral asap due to how debilitating it is / effecting your life. Hope you get answers soon x

[HolsBamboozledwomb in reply to AllthatGlitters]

I'm going to call tomorrow, I just can't even comprehend the day I've had. Feeling so close to a reason and I feel like I've had a rug pulled beneith my feet. It doesn't help I'm coughing and I've little bits of blood in it, probably from the tube, I feel battered and bruised with no answers 😭 x

[mimilover in reply to HolsBamboozledwomb]

Yes call and be like me . Armed with answers . Especially “I was told you’d say this by my huge support group I have now with women who have been suffering and no one cares and we get passed off”. I’ll be sharing this later to my group which includes doctors . You should be ashamed of yourself for brushing me off. This is 2022. There’s much more knowledge about endometriosis now.OK NOW I CANT WAIT FOR MY APPT THIS THURSDAY.

I’m so sorry for you and everyone here I’m reading about . 💜💜💜🙄🙄😞😞😞

[HolsBamboozledwomb in reply to mimilover]

Yes share it around! It's hard at the moment to not feel completely defeated. My Dr is amazing and she really listens to me, she has seen me today in her clinic and told me that there is more that they can do and they will get to the bottom of it. I have post op chest infection and the blood vessels at the back of my throat are broken and my throat is much more red and swollen than it should be too, I have a very horse voice and she also warned me that because nothing has been removed over the next 10 days I will be in more pain rather than less 🙄. I hope you have a more successful appointment! And this army is right behind you 🧡🧡🧡

[mimilover in reply to HolsBamboozledwomb]

Love love love this . Yes yes …….thank you and I’ll be with you too ..the support is incredible here.yes there’s much they can do . 💜💜💜

[mimilover in reply to mimilover]

Thinking of you to get to the bottom of this for you.

[Angellouise]

I’m sorry you are going through this. My daughter is 20 and has so much pain she can’t go to school or work she has seen seven gynaecologists they could not tell us what was wrong . She has had two laps done and nothing was seen except for a dermoid cyst with weird tissue that Doctors cannot explain. I was told endometriosis can be hard to find if you don’t specialize in it so she is waiting to see an endometriosis specialist. I wish you luck

[HolsBamboozledwomb in reply to Angellouise]

I'm sorry to hear your daughter is struggling too. It's so hard to get your he'd around. I have been so disheartened by this, I was pinning my entire future on being fixed. X

[Angellouise in reply to HolsBamboozledwomb]

I know it’s so hard waiting to live again and have a future. Maybe you can see a gynaecologist who specializes in endometriosis . Take care and stay strong.

[Blueeve]

This is exactly what I went through for years until it was too late. The doctors used to say it's normal then I will be given pain killers, see a specialist and don't take anymore pain killers it will weaken the liver. It shall be well.

[HolsBamboozledwomb in reply to Blueeve]

Without painkillers I can't move, the pain is unbearable. I'm supposed to be going back to work with answers that I don't have. Have you got any further into your diagnosis?

[Blue_Sky12]

Hi, I had my first lap two days before Christmas and was also told no endo was found, just to go back to my GP. similarly to you I was absolutely devastated, how could there not be an explanation for all my pain and symptoms? I get the same kidney pain you are describing, bowel and chest issues amongst other things. I went back to my GP, Who initially suggested referring me to the pain clinic (which I know is a ‘we don’t know what the problem is but let’s help you try to manage it’ situation) and offered a colonoscopy. Then when I went to see him face to face because he wanted to check out my chest symptoms, I restated my situation, how the symptoms were extremely cyclic and that we were thinking of trying to get a private consultation. He listened to me amazingly and told me I was entitled to a second opinion with a different trust, and that he would be happy to refer me! I didn’t know this was a thing, but I’ve had LOADS of bloods, stool samples, chest x rays and colonoscopy and once results are back from biopsies, he’s referring me to a different hospital.

I would never have known this was possible had I not been bold with him, but also in continuing to research myself, particularly through the Nancy’s Nook Facebook page, I learned that from the length of my operation, the fact I only had two incisions and the notes I requested from the hospital, it would have been impossible for the laparoscopy I had to have been thorough enough to actually have checked everywhere for endo. So the likelihood of it having been missed is high and it’s surprisingly common for this to happen.

Sorry it’s such a long response, just hoped it might encourage you! I now have hope again that things might be different and I hope you can get some progress too. x

[HolsBamboozledwomb in reply to Blue_Sky12]

I have all the exact same issues, kidneys, bowel chest pain every time I have a period it feels like I've been fly kicked! I'm not convinced that this isnt Endo. I'm actually very sure that it is. Like you I have 2 incisions both low down, and I'm glad you have said that a professional medical person has told you it is impossible to see the entire abdomen from that, because the look of shock on the surgeons face when I asked her why my kidneys hurt when I am on my period, I said I go to the GP every month to check it's not a UTI and it's clear every time. And she looked shocked held her arms up and said well it's not a gynae problem. I hope you get a definitive diagnosis. Because this not knowing and being in pain and having gynae throw their hands up in defeat is just not good enough 🧡🧡🧡

[Blue_Sky12 in reply to HolsBamboozledwomb]

I am really sorry you’re suffering like that too! The flank/ kidney pain gets me every month too. I have had significant tenderness in that region for 18+ months now. Unfortunately on the two times I spoke to the GP about it, it wasn’t so bad on palpation! Seems to fluctuate unsurprisingly. I also now test my own urine when I have pain, and there’s blood in it around my period every month. I have also read recently that flank pain and tenderness may actually be diaphragm related rather than kidney. Apparently in order to properly visualise the upper organs, you would need 3-4 incisions, two being higher up, to be placed in a position where the operating table is tilted down at your head end so that the liver falls out of the way due to gravity, and still to have the liver moved around in order to check the diaphragm and behind the liver etc.

hope you can make some progress in feeling properly heard and move things forward. x