Feel like im getting nowhere :(

[anon1110]

Ok so I posted on here few weeks back about bleeding inbetween periods, having an early miscarriage etc...

Anyway went to see an endocrinologist today cos my prolactin came up high and I feel like im being pushed from one specialist to another with no answers in sight, as they said that after a repeat prolactin test it was borderline and there is no reason why I shouldnt be able to get pregnant as all my hormone levels are normal.

However im having red/brown discharge almost constantly throughout my cycle with only about 3 days break from it!

Now I have to go see a gyno, no idea how long that is going to take and am getting really pissed that it's been months now since I went to the docs the first time and im getting nowhere.

Is this going to be resolved or am I going to be left like this, im so upset :(

hi there, i don't know anything about this but didn't want your post to go unanswered. could you find the money to go private? i think one of the most frustrating things with trying to have a baby, whether the issue is trying to conceive; trying to keep the pregnancy after a lot of miscarriages, or both, is the sheer amount of time it all takes. if you could possibly afford to go private it does sound like it would be worth it, to get things moving.
presumably ( i didn't see your previous post) you've already had some basic investigations and there's no cause for immediate concern about the bleeding (they've done smear tests etc?) and so you've been pushed into a sort of 'non urgent' category in terms of seeing specialists?

Hi yes, I have had all the smear tests, swabs, internals, blood tests, ultrasounds.... nothing came from them!

The specialist yesterday said he didnt think that the prolactin was a problem as it wasnt too high and he would see me again in 3 months, but to me thats another 3 months of stress and no baby!

Im scared the gyno will say the same thing and leave me with no answers and tell me theres no reason why I cant conceive, but I do think the bleeding is a big thing and a major symptom and theres something thats someone is missing.

Wish I could go private but we just dont have the money :(

Hi,

Went to the doctor yesterday and she said that if the gynaecologist doesnt find anything then the only choice we have left will be IVF.

I feel like my world is crashing down on me and I cant stop crying, as she told me that it's unlikely that I would get it on the nhs as I already have a son and it's not something I feel I could cope with.

Im so upset and its not helping that everyone is asking when im having another baby. I feel like my heart has been ripped out.

Hi anon - I am so so sorry for what you are going through.

Your post has interested me because of your high prolactin level and spotting between periods.

There have been studies done showing that women with high prolactin level are more likely to have recurrent miscarriages.
Also low thyroid levels can cause spotting between periods which is called Metrorrhagia.
Your prolactin levels can increase with an underactive thyroid which is called Hypothyroidism.

Did the endocrinologist test your thyroid levels?

I had a high prolactin level last August and awaiting another test to see if I may have high levels again. I think I have hypothyroidism, but I will find out once I have proper tests done.

Hope you are okay xx

Hi,

Thank you for answering!

I have have my thyroid levels tested and they are fine, although I have lost a lot of weight the last 6 months, which is unusual for me, as I have always stayed the same weight, and everyone thinks I am ill!

The guy who I saw said that he would give me an mri and he would see me again in 3 months, I have now had these appointments come through and the mri is for april and I next see him in June.

I was so sure that it to do with my high prolactin cos my breasts are also really swollen and even though I've lost weight my boobs are the same size! and I know that it's linked.

Just wish I knew what was going on, everyone is ignoring the fact im bleeding and just looking at results on a piece of paper

Hi anon

I dont really have any medical advice for you but wanted to answer because I can really relate to the feeling of getting nowhere and the frustration with the waiting.

I had a lot of horrible complications after an mmc (completely different symptoms to yours though) and it took me 8 months to finally get a diagnosis and treatment plan put in place. I had to go private to do it. It was 8 months of hell, but I am really glad that I kept pushing for answers because I did get my fertility restored in the end.

I really recommend that you try to be your own advocate as much as you can, research everything you can on the internet, ask lots of questions and get as many different opinions a possible. For pretty much any medical condition that exists there is a yahoo support group whose members will share tips and experiences with you, sign up to ones you think may be relevant and see what you learn. groups.yahoo.com/

Going private will help you speed things up but will only really work well if you find out roughly in which direction you want people to start investigating first. It might feel like an impossible task but it IS possible to take an active role in your medical care and get to the bottom of things. Accept all the help that you get from the NHS but try to supplement it with other sources of support because they are not fast, and often miss things.

If you havent done so yet, ask for a copy of your medical notes, and get yourself a folder to start collating information. Take it with you to every appointment along with a list of pre prepared questions. Try and write a summary of your clinical history and see if you can email it to some private doctors and see if you can get their opinion (for free) Then ask how much a telephone consultation to discuss your options would be (seperate email)

Above all, dont lose heart, it is possible to get through this !!

mummyabroad thanks for listening, I wouldnt even know where to start how do you find private doctors email addresses, im not great at internet searching?!

I have already done some research, and think thats the only reason I managed to get this far, but everytime I try to look up my symptoms, no-one else seems to have it, or I find a forum where loads of people have it and they dont put any outcomes on it.

Just really hoping that the gynae will find something but not overly sure what they actually look for, I know people get diagnosed with psos and endometriosis, but wondering who would diagnose that or something along those lines?!

sorry im grasping at straws here!!

Hi anon

I had no idea where to start at first either. I eventually found specialists private doctors who deal with the problem I have (Ashermans Syndrome) from recommendations from some ladies on an AS yahoo support group.

Fertility issues like PCOS or endometriosis are sometimes diagnosed by G.P's but it is not their specialist area and the sooner you get referred to see a gynecologist the better. They should be the ones who make the diagnosis as this is their area.

PCOS is diagnosed by blood tests (LH higher than FSH on day 2) and pelvic scans (polycystic ovaries) and personal history (long cycles, missed periods and other symptoms), however some women do not have all of these markers but still have PCOS. Endometriosis is diagnosed after an operative procedure, where they see endometrium growing outside of the uterus, if you have very painful periods they may suspect endometriosis. Neither of these conditions sounds like they match your symptoms.

Have you got a copy of your blood test results? If not, ask for a copy of your medical notes (sometimes you just have to pay a few pence for photocopies, but in some areas you have to pay a fee of 10 or 15 pounds) You can then compare your results here www.fertilityplus.org/faq/hormonelevels.html#female

If any of the levels are borderline you should push for the tests to be repeated. You can look online and compare the "normal range" results in other countries, you will find that what the NHS considers "normal" is not the same in say Germany or the USA. You may also find that a private doctor will take more of a interest in borderline results, whereas the NHS will just ignore them and send you home.

Have you searched for conditions that Milky mentioned? Perhaps you can start a thread asking if anyone has had private treatment for this and with who? It did take me a long while to get the bottom of my condition. (I also spent a long time researching things like PCOS which had nothing to do with my problem!) but it is worth informing yourself as much as you can so that you can make the most out of your upcoming appointment. Do get your notes, and make sure you understand what is in them for yourself. Anything you dont understand, search for on the internet or post on MN, someone out there will have gone through it before you and may be able to advise.

Finally, why would your GP recommend jumping straight to IVF? What about Chlomid? IUI? or even (dare I suggest?) finding out what the real problem is and trying to fix it?

best of luck and let me know how you get on

xxx

sorry here is the link to check your blood test results

l#female

doh!

www.fertilityplus.org/faq/hormonelevels.html#female

Hi,

Well the gynae appointment is actually at a private hospital so I am going to go armed with questions for them and give them an interrogation!

With my GP, its the main reason im upset cos it feels like she cant be bothered to find out the reason and just said oh, just have ivf, that'll be fine!!

She did say at one point about clomid, but hasnt mentioned it since, but I was under the impression this was for women who dont ovulate.

Finally thanks for the links, will check them out when I have more time later x

Hi,

Just an update...

This month started my usual bleeding at day 15, lasted about 5 days, then stopped!

Now my period is 3 days late so took a pregnancy test this morning and guess what?! BFP!!

Am now absolutely terrified and cant get into docs until friday and cant even see my usual doc, cos I think I may have to go on aspirin as I was with my son and dont really want to self prescribe. So now im on tenderhooks!

Hi anon - WOW! congratulations! That's brilliant news and I am so happy for you! Were you still bleeding whilst you conceived? And has the bleeding stopped since your BFP?

Can't you get an emergency appointment with the doctor for tomorrow? How about phoning up and saying you need to see a doctor urgently or ask for a call back. I think the quicker you start the aspirin and get advice the better.

Look after yourself, and I really hope this works out for you xx

Hi,

Woke up this morning and have started bleeding again.

Am absolutley devastated and cant stop crying, dont even know why I bother anymore.

The doctors are completely useless and I have now lost faith in them.

I dont know what to do, surely they cant do anything now?!

oh I am so sorry anon :( Is it heavy bleeding or light? You need to get a scan. Can you call your GP and explain your situation and ask for a scan so you know exactly what is happening?

I understand how devastating this can be :( I am so sad for you.

What I have learnt since my fourth miscarriage is that you have to push to get the tests and treatment you need. All the women I have met here have fought hard to get tests and be diagnosed with problems, so please don't give up hope, and don't feel like there is no hope. There is treatment out there if you fight for it, so please don't give up.

Let me know what happens and what you decide. xx

Hi,

Managed to get into the doc's this morning and she did another pregnancy test for me and it came out as a very clear positive.

My bleeding is the light brown I always get when im due af and also beginning of a miscarriage too, but saying that I also bled with my son but it didnt start this early.

She has booked me in for a scan, but is 2 weeks away, as she said there is no point scanning too early cos they wont see anything.

So its just a waiting game, I have to ring her tomorrow to find out if I need aspirin cos she cant prescribe it and she has to ring a consultant to find out.

I am so glad that you managed to see a doctor today and have a scan booked.
I know it is such an easy thing to say, but try not to worry and keep positive. I know how hard it is not to worry though. I am thinking that if you had aspirin with your son, then you would need it this time too, but ofcourse I don't know the correct protocols involved with this.
Are you experiencing cramps at all? I am really hoping that everything works out for you.

I had aspirin with my son cos a couple of months earlier I lost a baby due to placenta abruption at 33 weeks and didnt go on aspirin til week 12, but I have had miscarriages since, so im thinking taking it earlier would be a good idea.

Im hoping the bleeding just tails off instead of getting worse. I think thats a long shot though!

I am so sorry about the loss of your baby - yes taking it earlier would definitely be my first thought too. I hope you get that sorted out with the doctor tomorrow.
Yes, hopefully the blood will tail off - I am keeping my fingers crossed and hopefully you will get through this. xx

update...

Had an early scan this morning and baby was seen with a heartbeat. Words cannot describe how relieved and happy I feel, I'm in shock!

Have been put on aspirin by the doctor so fingers crossed for an event free pregnancy! (long shot I know!)

Absolutely amazing! I hope everything goes smoothly for you from here onwards! Please keep me updated!

Can I ask you, have you been diagnosed with any clotting problems, or have they prescribed aspirin just as a cautionary measure? I have been told to try aspirin with the next pregnancy, but I haven't been diagnosed with any clotting disorders.

Hi,

It's more of a precautionary measure I think, most hospitals do this with a previous placenta abruption.

As it's only 75 mg, have been told by many specialists that it doesnt harm the baby in any way, so I think it's worth a try. I know they can do blood tests for clotting disorders, have you had these?

Yes, I have had all the usual blood tests for clotting disorders, and everything came back fine. I am preparing myself to start trying again soon, and have already bought my 75mg aspirin - very nervous..

good luck, fingers crossed everything goes well for you, let me know what happens.

Make sure you have something to eat when you take the aspirin though- very important, it can damage the stomach lining if you dont.

xx