r/endometriosisuk

I don't even know where to begin with this. I just need to get things out in a safe space. I don't expect anybody to read this, especially to the end. I just need to vent in a safe space more than anything. 

I've been dealing with some symptoms for a long time now. I'm trying to cut out a huge part here, but I had the usual being dismissed. A GP had me book in for blood work, which apparently came back okay. I spent a year getting worse, while I tried everything I could to help myself. I had really bad digestive problems and horrendous bloating and pain.

At the start of last year, I hit crisis point and reached out to doctors again. They arranged for a nurse practitioner to call me back. When she called me back, we went over everything and she acknowledged that I had tried everything that I could. She booked me in for blood tests again and for a physical check-up. During that appointment she told me she had referred me for an ultrasound. She mentioned endometriosis and how it can be difficult to diagnose, but never brought that up again. Because of my digestive issues, we did think it was something different. 

After my results came back she became incredibly dismissive. She told me that it all looked just fine and that I needed to stick to the anti-inflammatory diet. I had to insist that something wasn't right inside me. It felt like my insides were dying, and I had no other way to explain it. At that point, she told me she would see about referring me for an ultrasound. She hadn't referred me like she had said she had. I was referred for the ultrasound and left to it. I looked at my blood test results and noticed that my ferritin level was at 25. It had been slightly higher the previous year. My B12 level was low but not at the point they would say anything. There were a few other abnormalities in the serum tests. I just tried to carry on with what I was doing and hoped the ultrasound would help indicate what was going on. 

About a month after that appointment with the nurse practitioner, I ended up having to call 111. I had been vomiting a lot again and I had awful pain. The person was really helpful during the conversation and booked me in for an appointment with my GP for the following Monday. At the end of the call, she told me that my other symptoms didn't match anything that she could think of and that I needed to get my worries under control, or I was going to give myself anxiety. It made me feel like I was wasting everyone's time. 

The nurse called me the following Monday and said she would chase up the ultrasound. Two months later, I had an abdominal and pelvic exam. I was asked if there was any family history of endometriosis, and then was asked if I had any bowel trouble. I was told my bowel was absolutely backed up with gas. I was then told I should hear from my doctor and, if I didn't, to give them a call. 

The next day, the same nurse called me to tell me that two large bilateral suspected endometriomas had been seen. She was calling to ask if I consented to being referred to gynaecology at the hospital. She then asked how I was managing the pain. I told her I wasn't, and that I was taking paracetamol and ibuprofen and it wasn't even touching it. She just said to keep taking them because anything they could give me would only be temporary. She called back and asked me to go in for a CA125 test. I had that the following week. It was raised and I was put on the two-week pathway. 

I was seen at the hospital in under a week. The consultant listened, but didn't note anything about the amount of pain and discomfort I was in. A lot of my symptoms weren't noted. I understand that they are pushed for time, as well as looking for certain symptoms and trying to go from there, but it has felt like nobody has wanted to acknowledge the pain and how unwell I've been feeling. The consultant referred me for an urgent MRI and same-day blood tests. Then I heard nothing for three months. 

After trying to chase up the results again, I received a call back letting me know that my results had been reviewed by a MDT and an appointment with a consultant had been brought forward because of the severity of what was seen. Other than that, I would have been waiting even longer for results. Four weeks later, I had an appointment and the consultant went over the results with me. The larger endometrioma had pulled my ovary backwards behind my womb. There was talk about adhesions and my sigmoid bowel too. My fallopian tubes had old blood in them, and he mentioned they were twisted. There was other talk too, but I can't fully remember it right now.

We spoke about surgery and he agreed to put me on the list for a hysterectomy. I know it doesn't cure endometriosis, but I have such painful periods. He agreed that some of my other symptoms sounded like adenomyosis and even though nothing indicated it could be that, they can't tell for sure until they do surgical pathology. He agreed to remove the endometriomas, my tubes, as well as endometriosis removal. He wanted to save my ovaries if possible because of my age, though they might need to be removed too. He went over everything and how risky the bowel stuff can be. He said there would be himself and his colleague doing the surgery, as well as a colorectal surgeon on standby. We spoke more about my symptoms, and he said he was concerned about possible cancer. I was told we couldn't proceed unless he did an endometrial biopsy, and I had a couple of other procedures, including an up-to-date smear. I was told as soon as that was done I would be put on the surgery list. 

I had it all done in November. I had the smear results within days. Weeks later, I was told the biopsy showed no signs of cancer or pre-cancerous cells. I heard nothing else, so I called to check I had been put on the surgery list. I left a message twice in December. Nobody got back to me. I felt like I was bothering them, so I left it a bit longer. In January, I contacted them again and somebody got back to me within 20 minutes to let me know that they had checked, and I wasn't on the list, but they could see my consultant had mentioned surgery, so they would pass it on to the booking team and I would hear back soon. A week later, I received a text saying that I was on the surgery list. It wasn't backdated to November. It was from January. I know it doesn't sound much, but it felt like another blow. 

Since then, I've been feeling incredibly unwell and can feel myself getting worse. I spoke to a different GP in December and we had to start back at the beginning again. It's really difficult because there is only such a small amount of time to go over things, so it's hard to get anywhere. The doctor doesn't have the time to go through documents and notes properly, and they've got to get through the appointment and go on to the next appointment. I understand they are really pushed for time. I was booked in for blood tests again in January. My ferritin levels had dropped to 12. I was told my vitamin D and B12 levels were low, but only just under what they class as low, so to take supplements. I was told they don't take action on low ferritin levels unless it drops below 11. 

I've felt so exhausted and alone, I didn't feel the need to contact the GP again. It's felt like there is little they can do because I'm waiting for surgery and I haven't even had an official diagnosis yet. I've been feeling worse though, and I had a private ultrasound not long ago, out of desperation to try to know what's going on with me because it's a long time since any scans were done. The endometriomas have both grown. 

I spoke with the GP last week and she must have quickly gone over some of the documents this time, because she had seen something from November when I had been discharged from the day surgery at the hospital. She was under the impression that I had had surgery. I told her that that was from when I had the biopsy and a couple of other things done, and that I was still waiting for surgery and hadn't heard anything. She asked if the hysterectomy had helped. I told her I haven't had that yet, that I'm still waiting for all surgery. She seemed to understand then, then offered to write to my consultant. I was honest with her and told her that I don't know how much longer I can do this and that it's all genuinely making me not want to be here anymore, it's that bad, and that I kind of feel like I've just been left to it. 

It was hard to fit everything in because the 10 minutes were up and I didn't get to go over the physical symptoms. She was very sympathetic and kept saying she was sorry I'm going through this. But I know there is only so much they can do. She asked if I want another CA125 test doing, told me she would write to my consultant, and that was that. I know they are pushed for time and can only do so much. 

I know it's a waiting game and that everyone thinks their surgery is more important. I'm just feeling so trapped, depressed and alone. I've been told that I'm looking at at least another year until surgery. I really don't have that in me. 

It doesn't help that I get blurred vision, shoulder pain and shortness of breath around my period. I was told that that's nothing to do with any of it, then it was suggested that it's just anxiety. I deal with constant painful bloating, pain, nausea, leg pain and exhaustion. This all gets worse, along with stabbing and squeezing and other symptoms, around my period, but any professional I've seen so far just notes some of the symptoms and then being around my period. Nobody seems to want to acknowledge that it's a constant struggle, but it heightens around my period. 

My quality of life has gone. When I manage to get out, as much as I love being outdoors, it takes it out of me. I'll be going on a walk or doing a bit of mudlarking, the only things really bringing me any kind of joy, and be doubled over in pain, sometimes vomiting. I really struggle in the mornings, especially with nausea and pain. But they don't see this. So I write it down and it's still ignored or dismissed. I just don't know what to do. I don't expect any doctor to be able to just magic me better, but I wish I could speak with one who has time to actually listen. I'm drained, I'm suffering ,and I can't do this any longer.

I’ve wondered if I have Endo for a few years now. Never had huge problems with my periods but have always had problems with pain around ovulation, mid cycle spotting and spotting the week before my period. in the last few years there have been days its been so bad I’ve been unable to get off the floor until pain killers have kicked in. I’ve also had sciatica for years that went away during pregnancy and recently brief episodes of PR bleeding either at ovation or around my period.

Ive tracked my sciatica and it comes on before ovulation, then settles and flares before my period again.

a gynaecologist also said it looked like I had a spot of it on my cervix 4 years ago.

so, after being referred to NHS services and finding out the waiting list was a year I used my private insurance and was seen today. the doctor said the spot was tiny and he scraped it off there and then. said he didn’t think it was endo, then said rectal bleeding from endo usually happens around menstruation, not ovulation. he didn’t ask me much and just got me to reel off my symptoms. said my examination was normal and didn’t seem convinced it was endo. he offered hormones or surgery but now I’m not sure if I should go ahead with surgery or not as he seemed so happy convinced.

As stated in the title im looking for a BSGE centre, my current nhs consultant has honestly not been helpful at all especially after surgery with my on going problems and pain. I have an appointment with him monday and im going to ask to be seen by a specialist but I want to make sure I go in the appointment with some hospital suggestion.

Im leaning towards Addenbrookes endo unit in Cambridge.

Have any of you been there ? Any good/bad experiences ? Do you suggest anywhere else ?

Where did you guys go to see a specialist and where did you go. I want as much information to walk in my appointment with as honestly my consultant just seems to dismiss me alot.

T.I.A 😊