Doctors given up. Not sure what is wrong :(

[Amywoodx]

Hi everyone, I wanted to ask if anyone else has felt this way too. I had a lap on 21st sept for suspected endo and none was found. Before my lap, a lot of my pain had subsided, I was able to go toilet every morning which really helped with my symptoms throughout the day and my pain levels. However, since my lap, I've had a change in bowels, on and off constipation. My periods were on time up until this month. It's been over a week since I was due on my period and I still haven't come on. This morning I woke up in absolute agony, found it hard to stand and when I tried weeing on the toilet it hurt so bad that I passed out for a while. I now feel really fatigued. I always wake up in pain every morning, my sides ache and it hurts as if I've been filled up with gas/air but it goes away after a while and especially after a BM. However today it was very different. It hurt so much in my lower abdomen to the point where I passed out. I took Laxido the night before and not sure if that could have contributed to the pain. My gastro told me to take it for 6 weeks but I'm too scared to continue it after what happened this morning. The pain usually stops but this time it didn't. So I took mefenamic acid and paracetamol and it's manageable now.

Few hours before this happened I rang the doctor and explained that I hadn't come on my period yet, I'm also getting a few spots on my neck and face which I don't normally get and it's horrible to see. She laughed at me, told me not to worry and when I asked for a blood test for hormones she refused. I do remember 3 months ago I had high prolactin levels but I had regular periods. This month I haven't had my period and it's really bringing me down. Of course I don't want to be in pain from the period but not coming on is equally as stressful. I'm already so stressed because of uni work and worrying about my health, wondering where my period is and also being scared that when it does arrive that it's going to be agonising. I'm not sexually active so there is no chance of me being pregnant. Has anyone experienced this? Could it be because my period is coming and hasn't come yet? I feel like the doctors are no help to me at all anymore, they did a laparoscopy and didn't find anything so they believe there is not much more to be done. I'm going for a scan of the ovaries in January on Harley Street.

[plotments]

I can get like this with BM, especially when I'm due on or mid cycle. I was really bad the other week and was late on period, things calmed down after I came on.was op with specialist endo surgeon, as normal gynae can miss it?

Are you getting a second opinion from harley st?

[Amywoodx in reply to plotments]

Op was with endo specialist, one of the Nancy nook ones so I’d normally doubt the findings but since he is a very well respected surgeon I can’t think of any reason to doubt it but it still sucks not knowing what it wrong how late was your period? And yeah hopefully harley st can advise me when I go for scan

[plotments in reply to Amywoodx]

that's good it was endo specialist, I hope you get some answers when you have your scanMy period was only a week late but long enough to put hormones into overdrive

take care

[Angellouise]

My daughter has been going through the same thing for five years she is now 19 and can’t work or go to school. I’m taking her to a private clinic for a MRI since her Gynocologist thinks nothing is wrong. You can find information on Nancy’s Nook on face book. I have read a lot about endometriosis and many woman go through hell for years before it is diagnosed. Maybe get yourself an endometriosis specialist. Don’t give up and good luck.

[Amywoodx in reply to Angellouise]

I have had a laparoscopy from a Nancy nook specialist and he didn’t find any endo

[Jb100301]

Nancy, although I do not have an answer to your questions, i do want to say we are both in the same boat. I myself and in the exact same situation. Just know that you are not alone, there are other people like us out their with the same pain, that are not getting supported by their doctors and do not yet know what is wrong with them. It may take a very long time, but stay strong and keep fighting!

[Lindle]

I'm not sure why admin are allowing mention of Nancys' Nook but many women are having bad experiences with some surgeons on there. There are more reliably UK groups. Please feel free to pm me if you would like more details.

[stevieflp]

Sorry to read what pain you are going through.

Stress in itself can cause your period to be late but so can elevated prolactin levels so if your period does not come along in a few weeks, might be worth having prolactin levels checked with a blood test. I know from personal experience re prolactin.

I can’t comment on the cause of your pain as only a doctor can diagnose that but it does sound like a possibility of endo. Endo can have many different effects as it is within the peritoneal cavity so can cause bowel and bladder issues.

It takes a very experienced endo specialist surgeon as endo can be extremely difficult to see with the naked eye and can be missed.

I had stage 4 endo and had total radical excision surgery which removed all seen and as yet unseen endo and it sorted me out but very few surgeons do this. Sadly my surgeon is now retired. Some do something close which is wide excision. Most however remove patches of endo that can be easily seen. Hence there is a myth that endo always comes back. Generally it is because it was never all removed as it was unseen at the time of the procedure.

I hope your surgeon was right and you don’t have endo but your GP should take your pain seriously re the effect it is having on you and refer you to find out what is causing this for not endo.

Sometimes you have to persistent to get them to refer you. It is surprising how many GPs are really too clued up on endo and think it is a period problem. If you don’t get the help you need, ask for a referral to an endo specialist surgeon rather than a general gynae consultant.

I hope you get sorted one way or another. All very best wishes

[Amywoodx in reply to stevieflp]

Thanks for your response! Really happy to hear that excision sorted you out! I'm going to get my prolactin levels checked this week with a blood test I think as I still haven't got my period. I did have my laparoscopy with an endo specialist surgeon but even if I get re-referred to a gynae I don't think they will consider endo again as nothing was found in the lap and they believe it would be pointless to have another laparoscopy which may cause further adhesions. (which my gastro thinks is what could be causing my pain)

[stevieflp]

Glad you having prolactin checked. The pain and stress of this situation in itself could also have put you out of kilter. Yes adhesions can cause pain but why do they think you have them? Endo in itself causes adhesions. Sometimes adhesions form Post-operative but not too likely just from a lap where no endo was found as they would not have done anything major if keyhole. Doesnt sound like adhesions from a keyhole lap investigation would have caused adhesions to affect your bowel. Just something to mention / question when you talk to them. Good luck x

[Amywoodx in reply to stevieflp]

Yep they weren’t sure why I had an adhesion. They found it via the lap, it was just an adhesion to the omental abdominal wall which they cut off. they say those type of adhesions can often just form themselves or by infection which I may have had but again not 100% sure I think if it was adhesion around the bowel or anywhere else etc it would’ve been more of a concern but they believe that the adhesion they removed was not the cause of my pain to begin with 😩