Recently Diagnosed

[LilacPetals]

I was recently diagnosed with stage 3/ 4 endometriosis after a long drawn out process of back and forth to my GP because I was in constant agonising pain and heavy periods. I have sharp stabbing pain in my lower tummy that flares up at any time throughout my menstrual cycle. My pain is always in my stomach, back, hips, pelvis and legs and is worsened when I am on my period. Sometimes the pain is so severe I am sick as my pain threshold isn't very good.

I often can't move or function because of the pain and because of this I find myself loosing money as I can't be at work. My manager is so understanding about this and tries to help if possible, like reducing my shifts so I work shorter shifts.

I also suffer really badly with other symptoms like fatigue, IBS, headaches and frequent UTI's because of my Endometriosis. My IBS Flare ups are bad most of the time and nothing I do or take ever seems to help.

My GP has tried me on lots of combined pills to see if they help but they don't, 2 of these pills have made my symptoms worse and caused me to be on my period every week. I have tried numerous pain relief, such as Naproxen and Co Codamol (30mg Codeine) but these do not even touch my pain. I've changed my diet as I believed that this might of helped, especially with my IBS Flare ups but unfortunately that hasn't helped either. People talk about their 'good' days and their 'bad' days but my 'good' days are outnumbered by my 'bad'.

I'm now on a waiting list to see my gynecologist to talk about having surgery as I have Chocolate Cysts on my ovaries and lots of scar tissue causing me so much pain.

What I would like to know, is if anybody knows of anything that will help me with my symptoms and to know that I'm not alone?

[Mrs_Potts]

I’m so sorry to hear you’re going through this. It absolutely sucks and is something I’m very familiar with. You’re definitely not alone in feeling at your wits end when nothing seems to help. I’ve finally found a hormone pill that has settled the heavy periods down but have chocolate cysts on my ovaries which cause me pain most of the time. Like you, when I get my period I often vomit due to the sheer agony and sight of my own blood loss. I did find that a prescription for tranexamic acid tablets helped as they controlled the flow of blood a lot and helped the pain a little. Maybe something to try if you haven’t explored that yet as doctors are very quick to prescribe hormone pills but they don’t work for everyone. I’m sure you’re already taking iron if you’re fatigued as this is usually due to anaemia in women with Endo, but id say it’s also worth looking into getting strong iron tablets like ferrous fumarate on repeat prescription and taking them every day for a bit to see if it helps. You’ll probably find your surgery solves things for a good while. I’m on the list for my second round! It’s hard but you’re not alone. Sending strength xx

[LilacPetals in reply to Mrs_Potts]

Thank you so much. I have an appointment with my doctor this week as my iron has been dropping and I've been trialling iron tablets you can get over the counter but I'm still very weak and tired all the time so I will ask if I can have some stronger iron tablets on prescription like you suggested. Good luck with your second round of surgery. 🙂 xx

[Cocoacupid]

am sorry hun. I too took along time to be diagnosed. I am stage four with a frozen pelvis and bowel endo. I too am out numbered by bad days compared to the good. I was getting really fed up as pain wise is severe even though have a coil. My bowel symptoms are so bad now I had to ask doctor for anti diarrhea tablets as my runs are more now than I am constipated. I get very nauseous a lot too. Have just been put on another nerve tablet to see if this helps with my pain. As I’m waiting for surgery’s. Xxx