A series of unfortunate pain. Do I or don't I have endo? And if I don't! Then what exactly is the problem?

[sookaso]

Ladies, apologies in advance for this long post. But I have been experiencing what can only be described as a series of unfortunate pain. have found my self back to square one. A full 360. I am at a loss. I feel even more lost than I did before I started my journey to find the reason(s) for my chronic pain. I am writing this merely as a place to reach out, in the hope that I get some advice or help as I do not know where to go or what to do anymore.

Let me just list off my symptoms (Some of these symptoms began at the age of 13 have been playing up and worsening on off. I was often taken into hospital at the age of 15 for bleeding out and collapsing. And it has been chronic pain for the past year and a half)

- Painful, Heavy period (Most of this has left me unable to walk or with a need to go to A&E from collapsing or almost collapsing) that would cause migraines, backache and painful diarrhea

- Cramping, spotting and abdominal pain between periods

- Pain or/and bleeding during or after intercourse (Sometimes lasting up to two days

- Pain with bowel movement (The symptoms I experienced from my bowel has been put down to IBS)

- Bloating and flare-ups (This is always accompanied with lower back pain that travels down through my right leg and sometimes up into my shoulder)

- An alternation between constipation and diarrhea between periods

- fatigue that would worsen just before my period

- Intense pelvic pain. sometimes coming on suddenly and lasting for minutes at a time

My Story-

Last September I underwent my first laparoscopic surgery for suspected Endo by a Dr Robert Hawthorn he also works with the

Greater Glasgow & Clyde Endometriosis Centre - BSGE. Although my getting to this point did not come quick or easy. It took me three GPs to finally pass me on to the gynaecologist. I was told by one GP 'Some women are just unfortunate in this area' to which I replied 'Surely the pain I am in is not just down to being a woman. So I just need to suck it up? ' Her reply 'Well, you are older now. Your body changes the older you get' I had just turned 27. and have been experiencing problems with my reproductive organs and periods since the age of 13. So after I begged her, I was referred. I first went for an MRI scan. the results came back 'Nothing found' But they could not get a look at my right ovary as there was a build-up of gas around it. I found this strange as it is my right side that I struggle with. I got the call saying there had been a cancellation and if I would be able to come in and get my laparoscopic surgery done. I had been waiting for months so I took the spot as my symptoms had worsened and I was now off work sick for two months due to the pain and depression it caused. I never met my surgeon before the surgery and the surgery its self was a rushed, awful experience that served me no answers. I was under for no longer than half an hour. I went into the operating room around 12;30 and was back home for 3 pm. In that space of time, they put blue dye down my tubes and that came back fine. As far as I am aware no pictures were taken nor was a biopsy taken. I received my notes a month later and all it stated was 'No endo found. Not a gyno issue'

When sent back to my GP she ruled out any gyno issues and became irritated with my persisting that something wasn't right with the findings during the surgery. She then went on to imply that people with emotional instability (this was her referring to the fact I have a borderline personality disorder) can think pain is worse than it is or even believes it is there altogether. I made a very sharp point of saying 'This is not in my head'. I have Since changed GP. I was left with no answers and the pain grew worse so I referred my self to the health clinic. I was seen by a nurse who did a pelvic examination. she said there was an inflamed/redness inside my vagina not much else was done with this. After this, I had yet another appointment (this was the third gynecologist I seen in 6 months or more) I sat with her for no more than 3 minutes and gave her a brief and she said because my laparoscopy came back fine there's nothing she could do that all she could offer was the contraceptive pill. After starting the pill, I slowly started to notice a difference with the facts my periods stopped and the pain becoming less each week. But the problem I was now having was with my moods. This was difficult, causing suicidal thoughts and began to trigger my mental health. But my pain was practically gone. I had a little nip here and there. But I was free from the chronic pain. I was having sex again with my partner pain-free. my flare-ups were next to known and my bloating was rare. But I had to reduce my dosage about 2 months ago due to the impact it had on my mood and slowly the symptoms began to creep back in. The only thing I am still free of is those horrible periods.

So from there, I got sent to the Gastro clinic. They found within a stool sample that I had high inflammation. And sent me to an IBS specialist. I sat with the distortion for almost an hour and a half. I give her a list of my diet plan, food and exercise routine and how I have made X, Y and Z changes to my life for the past year and that I was doing everything I could to fit the diet or lifestyle to 'ease' ibs before they even 'Diagnosed' me with it. To this, the specialist said 'I don't doubt there are ibs like symptoms going on but I am sorry I don't think I can help you as I think whatever is going in is a lot more serious than ibs. You are doing everything already that I could ask so I don't understand why your symptoms aren't lessening or getting better'. So she referred me to get an Endoscopy. To none of my surprise, they found nothing. It came back that nothing noticeable was wrong with my colon and my bowl appeared normal. So now where I am is back to square one. I am tired of excuses. 'It is IBS' or 'It is because you are stressed'. I have been living a fairly balanced, healthy and happy life. I enjoy my job and have a very supportive network of family and friends. My mental health is not the problem here. My body is. I have no way of knowing where to go. I just need to find answers and someone who will try harder for me. I cannot spend the rest of my life this way. My partner and I are thinking of having children in the next two years and the thought of stopping my contraceptive pill and going through the chronic pain that is my period is like a nightmare.

[Char411]

What an awful experience you’ve had. I had numerous tests, blood, stool, scans, MRI, endoscopy and colonoscopy which all came back clear and I felt so frustrated at being told nothing was wrong, I was lucky that I pushed for a lap and they found my endo.

It is not uncommon for endo to be missed by general gynaecologists during laparoscopic surgeries. Have you considered asking to be referred to a BSGE endo specialist centre. I have heard of many cases where women have a second lap performed by a specialist and endo is found. Please don’t give up, you know your own body and it’s sad that we have to fight for answers this way. This group is a great outlet and never fails to remind me I’m not alone. I really hope you get some answers soon

Big hugs xx

[Lushbookkitty]

I agree with Char, endo can be missed at lap by an inexperienced surgeon. I had a very similar experience to you with my surgery, it was done as cancellation, I never met the surgeon and wasn’t under long, just discharged by a nurse handing me notes saying “nothing found, will be relieved no gynae pathology”. Needless to say, I was not relieved!

You deserve better and you deserve answers. I’m lucky in that I have a supportive gp. Under the nhs you can ask to be referred to any doctor in the country. I’m currently waiting to see an excision specialist about 200 miles from where I live, because I know she’s an expert (and it’s where my sister lives).

If you’re on Facebook, there’s a group called Nancy’s Nook - it’s not a support group but more like an information library, but it will help you learn more about endo, and how common it is for it to be missed. It might also help to keep a symptom diary with a pain score and details of how it’s impacting your life to help doctors understand.

I really hope you find some answers and a supportive doctor. It’s definitely not in your head xxx

[sookaso]

Hey ladies A wee update

I booked an appointment on Tuesday to see a privet consultant that I found, he specializes in endo and I saw him last night. The best decision I have made in the past year and a half. It wasn't cheap but worth it. He was so kind and believed every word I said. He actually listened and helped me see that it is not just in my head. And he has no doubts that this is a gynaecologist problem. I had 30 minutes and he asked all the right questions and sympathized with my story. So now, he's going to be writing to my GP and setting up a plan for me to move forward. He was so sympathetic and actually never palmed me off. I feel a slight weight has been lifted. He doesn't disagree with my thoughts on my first lap. He said there quick well could be a chance that my first surgery was wrong and it does sound like I have endometriosis but he was conflicted as he also thinks I could have chronic pelvic pain syndrome. He is going to do everything he can to help me and direct me on to the correct path and said he can help me get to a place of managing my pain even if we never get to the bottom of the reason for that pain. So he's giving me a few weeks to think out what he has offered plan wise;

1st pain relief/management clinic.

2nd MRI Scan

3rd a second laparoscopy and this time with a biopsy taken.

Still no solid answers or diagnosis. But I feel this is a more positive look in the right direction. To have him listen and take everything I said seriously and not dismiss my thoughts on my body has just lifted my spirits again. So please don't give up. Keep fighting and pushing to be heard.