BSGE Appointment - A Nightmare.

[fieldsofsnow]

Hi,

A few months ago, I made a post here after I had my first lap in June, after a long time of pain and suspected level four of the disease. The surgeon did not examine my POD, nor did they do any further examinations to see if there was any involvement with my colon (which, is what is suspected, as my bowels are definitely involved). The surgeon told me "there was no gynaecological cause for the pain."

After speaking to a few people on here, I went back to my GP and demanded that I be sent to a BSGE approved centre-- for which I did research for. I chose a clinic that said they work closely with colon surgeons and specialists, as well as urologists. I chose it because I thought I would get further working with a team of people, as my case seems to be an involvement of both my reproductive organs as well as my intestinal tract.

After 3.5 months of waiting for my appointment with this clinic, I finally went in last night. The specialist I was meant to see was "away"--presumably he was called in to do an emergency operation. The nurses at the clinic assured that he would be back in an hour and 45 minutes, and that I would be seen by him. So, I waited it out, and was then told that I would not be seen by him, but instead another gynae from his practice. I was going to ask to reschedule, but the next appointment was another three months away, and I had already waited for this long. I was desperate.

I was seen by a woman, who called me in 2.5 hours after my arrival. I was the last patient in the clinic. Clearly everyone wanted to get out of there because the clinic was meant to close some time ago.

She asked me what was going on. I had explained that I had been thrown around between different specialists, most confirming the belief that it is endo, with involvement of the bowel. I told her about my failed laparoscopy, and why I chose to come to that clinic for a second opinion and further investigation.

I told her I had a copper coil. She asked why I had the copper one and not the hormonal one. I explained that I have mental health issues and all hormonal methods exacerbate the symptoms, making those symptoms much worse. I told her that I am currently taking lamictal, which is a mood stabiliser, and the first medication that has helped me in a while; but some research into this shows that it is effected by progesterone.

She then proceeded to go on Google in front of me. Opening several Yahoo Answers pages. After five minutes of this, she turned to me and said "It looks like the Lamictal would not be effected by the Mirena Coil, but instead, the Lamictal will definitely effect the Mirena coil, and you might get pregnant, but that's not what you would be using the IUD for anyways."

I was furious at this point, and couldn't help but laugh. I had already told her I was in a long term relationship. I definitely would not have a copper coil if I wasn't sexually active.

I then said: "This aside, could more of an investigation be done in order to determine or confirm a diagnosis and treatment plan if it is in fact endometriosis." She answered " It is probably not so good that you bleed for so long and so heavily, that you are in constant agonising pain, and that this is effecting your bowels for so long. Let me have a look at you in a second." She didn't end up examining me at all.

She went back to the birth control. I brought her attention back to the potential endo diagnosis. She said that I might have it and it's just invisible, or so deep that it was not seen, but there is "nothing she can do about that and maybe I should just go on real birth control."

She then wrote "Mirena and Lamotrigine" on a piece of paper and handed it to me. She said "Good luck with the pain." She showed me out.

I am really offended by this specialist and wish that I could name the clinic here to advise others. I would advise any women in the same position as me, to research the hell out of these doctors. I was very happy that I was meant to be seeing the person that I had researched, but in retrospect, I should have just told the clinic that I wanted to reschedule so I could see only him--even if the next appointment would be months away.

I just wanted to share my experience here. Mostly out of frustration. I am in the same place now that I was a year ago. I think my GP would probably dismiss me if I asked to go see another specialist. I am not sure what to do at this point but I am very tired. I know that there are women on here who have gone years without a diagnosis, after multiple specialists and laparoscopies. I am not sure how to be persistent anymore! I only recently moved to the UK and I have mostly only had bad experiences with the NHS. I do not know if this is just bad luck, or...

I guess while I am here, I would like to ask if there is anyone who is currently taking Lamictal, or another mood stabiliser, and who has chosen to go with the mirena coil?

Thanks for reading.

[Hidden]

Hi, sorry to hear what you are going through. I would definitely make a complaint through the hospital's pals service and see if you can get an appointment scheduled with the consultant you were meant to be seen by.

Hope you manage to get things sorted out.

[Tboag]

Hi hunny, so sorry you had such a bad experience, the lady gyne that you see in the end was she a bsge specialist or not,???

The marina coil could help your symtons but it won't help your desease, you need to get another refferal to a bsge specialist surgeon and have another laparoscopy,

X

[treez]

Hi

That's terrible I think it's so wrong that we have to put up with this sort of treatment it's not right no one should have to put up with pain you would think that with all the advances in medicine that there would be more help available,don't give up just persist and be firm that seems to be the only way with doctors and consultants.

Treez

[fieldsofsnow]

Hi,

Thank you both for your suggestions. I have been reading into getting the mirena, but I have to do more research on what its effects will be on my lamictal.

To Clairew23, thank you for suggesting I contact PALS. I didn't know this service existed, and I had considered making a complaint but didn't think it would go through to the actual department. I wrote a letter to them yesterday and received a sincere apology from a nurse clinician, who said that what happened was a mistake, and that I would be better suited seeing the specialist that I had originally been booked in for. She said that the specialised endo clinics within the practice only happen every 8 weeks within the practice, so the next one is on October 4th. Of course, I will be travelling on this day, so I have to wait for the next one... Which is on November 29. 😔 Better than nothing, I suppose.

Thanks again for your concerns and help xx

[Hidden]

Hi glad you got a positive response through the pals service. Hopefully your next appointment will be alot more positive and you are seen by the specialist you need to be seen by. Let me know how you get on xx

[tigerlily27]

Hello. I was just reading your posts and wondered what has happened for you next. Did you manage to get a diagnosis ? Would it be possible to have an update on your situation? I'm so sorry you had to go through all that. Must of been so hard. Xx