Endo and 'old blood'

[Caitlynf]

Hi all,

I am in need of some advice. I was diagnosed with Endometriosis in January 2012, and was told it had been removed.

I have since asked for my medical records, and the letter from the general gynaecologist who performed my laparoscopy does not really tell me anything, the severity or where the endometriosis was found, or how it was removed is not listed.

I felt much better for about a year after my laparoscopy, but since then things have been going downhill and I have been passed from pillar to post. The general gynaecologists seem to think that my pain cannot be from my endometriosis as it was treated at the time, and they have told me numerous times that the pain that I have outwith my period is not endometriosis. I know this is not the case, and tell them that, but they think they are right. They never seem to have my notes, and I never see the same consultant twice.

I have been for a colonoscopy and everything was healthy, but still they try to say that I have IBS. I also had to have pre-cancerous cells removed from my cervix last year.

Over the last 8 months things have taken a serious downturn, I have had "breakthrough bleeding" for 8 months, the blood/discharge changes everyday, sometimes it is black and thick with clots, sometimes it is brown with clots and sometimes it is grey. I have had this everyday for 8 months now and am beginning to worry. My GP and other gyny's have said that it is old blood, which is very well may be, however I do not understand why this has happened and why this is not going away. I get 4 days reprieve from this discharge after my period and then it comes back again. Add to this the pain I experience before and during my period and my bloated stomach and legs, I just don't know what to do anymore. Over the last year I have had night sweats, hot flushes and rectal pain most days, especially bad on my period and I have started to take time off of my work again. My pill has been changed 3 times since the discharge started to occur but it is exactly the same. I do not really want to go on hormones as I do not cope well on progesterone only pills/implants etc, and ultimately I want my symptoms investigated further.

I have an appointment with my GP on the 16th and I'm wondering if anyone has any advice on what my next steps may be. As i live in Fife, I have been told that getting a referral to the BSGE clinic in Edinburgh may be difficult, but I don't see any other option. In the meantime I want to know why this discharge/breakthrough bleeding has started to occur and won't stop. Does anyone think I may need a D&C? or do you agree that this is a symptom of endometriosis?

My long term symptoms from the age of 13 have been:

Heavy periods, bloating, swelling of the lower stomach and legs, severe right sided pain, severe rectal pain (this is the worst pain by far, which no one seems to know what the cause may be, it feels like I am sitting on a fist), pain in the vagina, pain during sex and bleeding after sex, hot flushes, general feeling of unwell, fatigue.

Please, if anyone has any advice, I would be so grateful.

C

[dabba76]

Hi from Perth!

I'm having similar issues with my consultant, tells me not to get hung up on the details. I have all my medical notes and to be honest they don't tell me too much either. I have written to him asking for full details but I don't hold out much hope of a proper response as I really don't think he actually knows himself.

Re: old blood, whilst on the mirena coil I had dark old blood every month, I brought it up with every doctor/consultant/family planning clinic I saw who all said it was nothing to worry about. I would say if you are bleeding as much as you are it should be investigated.

I had terrible night sweats/hot flushes whilst on the coil and these have reduced significantly since it was removed.

Your symptoms certainly sound like endo and whilst it may well have been removed in 2012 but if laser was used it may have only burnt off the surface of the endo.

My next move is booking a private consultation with one of the specialists who work at the Edinburgh Centre. x

[Caitlynf in reply to dabba76]

Hi Dabba76,

Good to know that someone is having the same issue's as I am, although I wish you weren't.

Can I ask how you go about booking a private consultation with one of the specialists?

C

[dabba76 in reply to Caitlynf]

I will pm you the guy's name but I think you need a gp referral (I think my gp will be happy to do this as she knows the issues I am having with my current consultant)

I spoke to a lady recently who had a consultation she was very impressed with him, he is sending her for a MRI, lap and bloods and is trying to have this done on the NHS. x

[Caitlynf in reply to dabba76]

Thank you so much, I can't seem to respond to your pm. I hope everything gets sorted for you, going to push to be sent to the specialist centre, so fingers crossed.

x

[dabba76 in reply to Caitlynf]

You too lovely! My GP told me she couldn't refer me it would have to be my consultant and I don't think he will so that's why I am looking to get a private consultation.

Keep in touch x

[Caitlynf in reply to dabba76]

I've never seen my consultant more than once! The doctor who did my surgery, I haven't seen since. And the consultant I see now always passes me over to his registrars!

I'll just have to go to my GP and see what she says!

x