I feel lost and scared.

[Kit38]

My journey started 26 years ago, I passed out in a toilet at collage. I was studying nursery nursing. I was told I have ovarian cysts. The start of a never ending pain cycle of hell. As the years of gone by and every 6 months I would end up back in hospital, it's women's problems here try this pill, coil, implants, let us stuff you with pain medication until your are well enough to deal with this at home. My first catch of a pregnancy was the bell that rung for my diagnosis Endometriosis. The baby was severely deformed and after giving birth she was lost between morgues before the autopsy could be completed. But after nearly dying after a hemorrhage, my diagnosis of years of woman's problems is Endometriosis. After 12 years of trying after our first I went back to the people I couldn't trust and ask for help. The first question was why I haven't you been back too see us (we are skipping the uncomfortable bits) I have a wonderful and one of a kind 7 years old.

My long winded question is this. Even after going through hell and back after having a flare up gain. Does it feel like I am back at the start having to explain myself and the reason for the pain? Shouldn't it all be on the record? When is enough a enough? As a working woman, a mum, a wife. I can't through the towel in and end it. So what I am left with is how do I life like this?

[Rainbow2468]

Hi I'm so sorry your going through, so much. It's wrong that we go through so much. All i can suggest is badger your GP. Perhaps contact pals they might be able to help. I'm on prostrap injections that's sorted me out, but I'm dreading them saying i can't have it anymore. I'm a carer for my daughter so i can't cope with how i was before. Sending you a big hug x 🤗

[Eeshpeesh1994]

Hi Kit38. So sorry to hear this it really is a truly awful disease. The only thing I would recommend is considering whether you can go private to see an endometriosis specialist at least for the first appointment and they can transfer you to an endometriosis specialist centre on the NHS if you are stage 3 or 4. I was diagnosed at stage 4 after ending up in hospital and emergency surgery and sadly we cannot have children due to this horrific disease. I'm still on the path of finding the right treatment and on the list for robotic surgery for excision, but it really was the best decision we made to find the right person. GPs and gynaecologists only know so much - you really need to try and see a specialist if possible. Your GP can refer you if you can't pay private but I think it was the best £180 I'd spent otherwise I would have been in hospital every month looking septic I really hope you can find some help

[Kit38 in reply to Eeshpeesh1994]

Apologies for my late reply. It's been a hell of a last few weeks. So I had a partial hysterectomy and endometriosis removed from my bladder and bowels. My tubes, cervix and womb were badly infected. This was 2 and half years ago. I hadn't realised that you could still get pain with just your ovaries left. It's taken me that long to go back. The gynecologist that saw me said I see your updates scans and I can't see any more endometriosis. I really wanted to say you can't tell on scans but instead I sat there and blankly looked mum. The plan is back on zoladex and (I have to be honest with my self his words not mine if this helps my pain. ) I have no idea how to do this anymore, I haven't been able to pick my girl up from school for 3 weeks, the medicine has wiped me out and I don't have the energy if someone says I haven't seen you for a while how are you? Not to cry. Thank you for your reply and understanding. This condition just drains me. 🥰 Thank you again for your kind words. Sometimes it feels better to get it off your chest. X

[Stitchrunner1]

I cried when I read your post. I know the attitude of doctors all too well. I have heard all their lame excuses. I had endo and my daughter has endo. In 60 years nothing of any significance has change. In fact since the beginning of time, there has been no progress what so ever that is of any use at all. We are all let down.

I hear you exhaustion. It is deeply saddening what happened to your much loved baby. That trauma alone is enough to floor anyone. You sound to the end of your rope. I urge you to go back to your GP. I really do understand your reluctance. It took me to get to your state before, at last someone did something. I had a hysterectomy. If that will help you, I don't know. I just hear someone desperate. To be despondent is very hard. Please get help from your doctor. One thing I would urge you to do, is be completely honest, don't put a brave face.. Sometimes we have to metaphorically kick the door down. We women, spend our lives trying to be good girls. Sometimes it is time to be angry and annoying.

One test I would urge you to try and get from your doctor is a test for anaemia. This condition can rob you of your life. It drains all the energy from your brain. It is a side effect of endo, doctors frequently overlook as they shove you out of the room.

I am sorry, to be gloomy but it is time to pull yourself off the sofa for one more battle with the healthcare services. You are seriously not well. I fully understand how hard it is to get up and plead one more time. You have a lot of issues going on here. You deserve better treatment. Don't worry about what is and what is n't on your record, what is important is what you get on your record now. Please Get Help. You need it badly.

[Kit38 in reply to Stitchrunner1]

Apologies for my late reply. It's been a hell of a last few weeks. So I had a partial hysterectomy and endometriosis removed from my bladder and bowels. My tubes, cervix and womb were badly infected. This was 2 and half years ago. I hadn't realised that you could still get pain with just your ovaries left. It's taken me that long to go back. The gynecologist that saw me said I see your updates scans and I can't see any more endometriosis. I really wanted to say you can't tell on scans but instead I sat there and blankly looked mum. The plan is back on zoladex and (I have to be honest with my self his words not mine if this helps my pain. ) I have no idea how to do this anymore, I haven't been able to pick my girl up from school for 3 weeks, the medicine has wiped me out and I don't have the energy if someone says I haven't seen you for a while how are you? Not to cry. Thank you for your reply and understanding. This condition just drains me. 🥰

[Kit38 in reply to Stitchrunner1]

Apologies for my late reply. It's been a hell of a last few weeks. So I had a partial hysterectomy and endometriosis removed from my bladder and bowels. My tubes, cervix and womb were badly infected. This was 2 and half years ago. I hadn't realised that you could still get pain with just your ovaries left. It's taken me that long to go back. The gynecologist that saw me said I see your updates scans and I can't see any more endometriosis. I really wanted to say you can't tell on scans but instead I sat there and blankly looked mum. The plan is back on zoladex and (I have to be honest with my self his words not mine if this helps my pain. ) I have no idea how to do this anymore, I haven't been able to pick my girl up from school for 3 weeks, the medicine has wiped me out and I don't have the energy if someone says I haven't seen you for a while how are you? Not to cry. Thank you for your reply and understanding. This condition just drains me. 🥰 Interesting enough I still to this day have chronic Anaemia.