Hello, sorry to read everyones stories. I wondered if anybody had any advice. A friend of mine who is a doctor suggested to me that I might have endo. I have been to my gp who was quite cynical. I have been getting pain in my shoulder blade, up my neck and around my shoulder with pain under my ribs when I breath in deep. This is happening during my period and around the time I ovulate. The pain feels almost like a stitch. Did anyone else have similar symptoms? And is there anything you can do/eat/try to slow progression if it is endo.
Thanks very much for any help.
Rachel
14 Replies
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I should maybe also say, I've been suffering from a lot of stomach problems over the past few years and I am 24.
Hi Rachel, I was diagnosed with endo in July and I have exactly the same symptoms as you plus all the usual pelvic pains etc.. I would be interested if anyone could answer this too. My diagnostic lap only looked below my belly button I was told so I have no idea if it is anywhere else. I'm having an op to remove the endo we are aware of with a specialist private consultant in oct and he said he would look higher up so I will post on here after my op. Katie x
The reason that you get shoulder pain following a laparoscopy is because the carbon dioxide they pump into you irritates the diaphragm which shares the same nerve supply as your shoulders. I suppose you could maybe have endo on your diaphragm which causes the same effect during your period. I just searched 'endo on the diaphragm' in the search box and there are lots of other women experiencing the same thing. Have a look.
The first hurdle in getting a diagnosis is getting past your GP. But even if you get your gyne referral they may not be endo specialists. I saw a gyne who said my endo on my bladder and uterus could not be treated as this would risk damage to these organs however I’ve been told on this forum that endo specialists can operate successfully on this. If you can afford it see if you can get a private consultation with a gyne who specialises in this area, it can cost around £200 but may get you somewhere and they can refer you back on to the NHS for treatment.
Hormone treatments are the best thing to help with endo e.g. pill, coil etc. as no ovulation = no period = no pain but no good if you want to start a family. I’m not the best person to ask about hormones as I’m TTC but other ladies on this forum can help.
My pain has always been in these areas even before the laproscopy. It's a very different type of pain to that. Almost like something is pulling on my ribs. The shoulder arm pain is like a heavy ache and tense feeling, sometimes almost pulsing pain.
You need to be referred to a specialist in Endimetriosis. Endo on the diaphragm could cause the symptoms that you describe especially as the pain is cyclical. This possibility needs to be investigated thourouhly.
Please go to your GP and ask for a referral to see a specialist.
Best wishes,
Thanks for your help and advice. I have a referral to a gynaecologist however I'm not sure what this will entail or when the appointment will be.
Katie do you feel the pain in your shoulder has a specific point which hurts most that the pain spreads from? I feel a specific point is where the pain is sorest then it radiates up my neck around my shoulder blade and on to my arm/shoulder tip. My doctor said that endo is mostly shoulder tip pain and I'd say the tip of my shoulder is not the worst point.
The thing with me is that the endo pains for me seem to be for the majority of the month and morph into each other so much so it's hard to describe! I'll try my best to describe though. The pain in my upper body tends to be a pulling stitch type pain under my left rib which radiates around to my back when it is bad, along with this pain I get a pain/ tightness in my right shoulder which always radiates to the back of my neck and often gives me headache. Sometimes the pain goes down my arm but this us more like a numb heaviness and sometimes pulses. All of a sudden after about a week or so it will ease up! I wondered whether it was a pinched nerve/ stress etc so went to chiropractors/ physios etc.. No improvement. I often get actual stomach pains with this which I have had loads of investigations for all turned out negative. I obviously have all the pelvic pains, swelling, cramps, leg, hip, back pain etc but it's this upper body pain which confuses me!! I thought it was my actual stomach causing this pain or my intestines/ gallbladder, spleen so had all these investigated all fine. Tried all alternative treatments eg: digestive enzymes, probiotics, cleansing diets, gluten/ diary free, food intolerance testing.. Everything! Nothing helped. Now I know I have endo I'm wondering if it's all linked! I'd love to hear from anyone on here who may have any experience with these symptoms too! X
I have the shoulder pain too! Just posted about it then read this! Still not diagnosed as waiting for an MRI on my shoulder although the consultant told me he is fully expecting it not to show anything and thinks I need referring back to a gynae specialist. Let me know how you get on... Nice to know I'm not going crazy! Xx
Shoulder pain can sometimes be down to problems with your liver i.e. if you're taking a lot of meds, particularly paracetamol. Referred pain is fascinating is felt elsewhere in the body when something is wrong. Here's quite a good diagram;
When I had an ovarian cyst, I felt the pain much higher, like belly button area. As you can see from the diagram though, referred pain from an ovary can trigger a pain point there. It's weird x
It is very interesting I have extensive Endo on both ureters and the referred pain area is inner thighs which is actually (one of the many ) areas that are really bothering me! Must be connected?
Take Care xx
Hello again, just to update. I went to an appointment with a gynaecologist, he used a ultra sound to look at my womb and told me it was unlikely I had endo. The pain I was experiencing seemed to subside for 2 menstrual cycles (this goes in line with me stopping the oestrogen pill I had been taking) it is now back. Any advice about why I am feeling this pain would be appreciated.
Hiya. Its sounds like endo on the diaphragm - you could try asking on the facebook group EndoMetropolis as there are many women there who have it and miggt be useful to share symptoms.
Just to add as well that an ultrasound of your womb unfortunately wouldn't show whether you had endo because endo is only found outside the womb. Hope you get some answers soon x
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