Catalogue of symptoms - what's going on?

[StrawberryShore]

Hi everyone. This is the first time I've posted so really hoping someone can help! I am 40 years old and TTC my first child. My husband and I started TTC 7 months ago and since then I have had a catalogue of horrendous gynaecological symptoms and I don't know what on earth is going on with my body. I am feeling pretty hopeless at the moment. I have always had very painful periods but never ever had any symptoms during my cycle other than pre-menstrual tension a few days before AF, plus sore breasts and occasional cramps 3 or 4 days before AF.

I've set out my symptoms below over the past 7 months - this is the exact period that we have been TTC. Sorry if it's really long but hopefully someone will recognise what is going on!

First month:
5 days post ovulation (PO) - started getting intermittent cramps and slight nausea - lasted 4 days.
9 days PO - Strong cramps and felt just like I do when I have my period - dozy, sweaty, headachy.
Next day, no cramps but increasingly sore breasts until light cramps 4 days before my period on day 31 of my cycle. Normal (i.e.pretty painful) period.

2nd month:
relatively few symptoms post ovulation aside from usual pre-menstrual symptoms, sore boobs and light cramps a week before AF due.
AF was 2 days late so I did 2HPTs and both positive - was pregnant!
3 days later, strong cramps and bleeding and I miscarried :(

3rd month:
5-7 days PO very intermittent nausea and cramps
8 days PO - very bad cramping throughout the day
9-10 days PO - two days of constant and extreme cramping, extreme nausea, extreme low back pain going down into legs, and extremely sore breasts. I went to the doctor who said she thought I had a burst ovarian cyst. The pain was so bad (and frightening) during this time that I almost went to casualty.
11-12 days PO - symptoms abated - just intermittent cramping, back pain
12-15 days PO - fairly sore breasts and I got AF on 30th day of cycle

Fourth month:
5 days PO - nausea, cramping
8-9 days PO - very bad cramping , nausea and sore breasts all day. I went to the doctor again as it felt like I had another burst cyst and she referred me to a gynaecologist.
9-13 days PO - sore breasts and I got AF on 30th day of cycle

5th month:
Ovulation was very late (22nd day of cycle)
4-9 days PO - Occasional and prolonged cramping
10 days PO - Very bad cramping for 4 hours in evening
11-12 days PO - two days of very bad cramping, very bad lower back pain, nausea, sore breasts, and several prolonged hot flashes
13 days PO - next day slight cramping and nausea, very sore breasts
14-16 days PO occasional light cramps, very sore breasts
17 days PO - period was slightly late so I did a HPT which was positive (very faint line) but started bleeding on the same day and miscarried (if I was really pregnant) on 43rd day of cycle.

I went to the gynaecologist at this point with the list above. SHe first said, 'this is an infertility clinic. I don't know what you're doing here if you've managed to get pregnant.' I explained I had a gynaecology referral for the strange pain symptoms rather than infertility at this stage ( tho I feel like I am edging towards this with the two possible miscarriages/chemical pregnancies). She was basically really dismissive and said 'maybe you're just more attuned to your body because you'tre trying to get pregnant'. I said 'I can see how you might think that and I don't want to overstate things, but I really thought I might have to go to casualty at one point as the pain was so bad'. She wasn't impressed by this! After an internal exam, she basically said 'come back in 3 months if you still have the pain - it might be endometriosis but the only way you'd know for sure is to have a laparoscopy and that carries its own risks and 30% of people having one find nothing wrong'. And come back in 6 months if you don't get pregnant.

6th month - my husband and I decided to do a controlled experiment and NOT TTC (it also included my husband saying 'I feel like I am a hamster in a wheel - I think we need a break from TTC!').
Around ovulation day , for the first time, I had an evening of intense cramps and nausea. Then nothing until usual pre-menstrual symptoms before AF.

7th month - my husband had flu but we did manage to have sex once around ovulation (poor guy!). I again got severe cramps and nausea for half a day around this time. Next few days I developed incredibly sore breasts - really thought I was pregnant until I started to spot 13 days PO. Next day light cramps followed by very painful AF (early) on 27th day of my cycle.

To sum up, I just don't know what on earth is happening. If I have endometriosis, there are obvious implications for fertility. Or, I wonder if, by some miracle, I am actually getting pregnant every time time and these are intense implantation symptoms following by recurrent chemical pregnancies (which worries me). I also thought I might have ovarian cancer (you know how your mind works...!) though I had a clear ultrasound a couple of months ago so I think I must be ok as this is how they diagnose it.

I am 40 and feel like I need to know what I am dealing with rather than waiting 6 months to do any fertility tests.

Does anyone have any experience of this or have any advice for what I should do next as I don't want to waste the precious few months of any fertility I may have left!!!

I live in North London.

Thanks so much

StrawberryShore

[eurochick]

For my first few months ttc I got a variety of symptoms in the 2ww, ranging from nausea to heartburn (for the first time in my life) to dizziness to constipation. Oh, and lots of cramping and sore breasts. I can't take the Pill and I haven't used hormonal contraception for about 15 years, so I am quite used to what is normal for me. Like you I was considering a "control" month of not ttc to see if I was imagining it, but I couldn't bring myself to miss a chance. After a few months ttc, the symptoms stopped.

I am still not pg. I have had the standard NHS investigations and everything has come back normal for both me and my husband. I'm having acupuncture and my acupuncturist mentioned reproductive immunology because there are a couple of autoimmune indicators in my medical history. I'm going to see a reproductive immunologist later this month to hopefully rule that out before moving on to assisted conception. Immunology problems can cause recurrent miscarriage and also implantation failure. I wonder if I am either implanting for a couple of days or not at all because there is no reason found so far why sperm shouldn't be meeting egg. If that's not the problem, at least we have ruled it out.

As you are 40, I would say you need to start fertility investigations right away. If those don't show anything up, consider the immunology testing. It is a new area and most NHS places won't offer it so you will probably need to pay privately. It's on my mind because my appointment is coming up but it might not be the explanation for me (or you) so sorry for banging on about it! The non-ttc month with fewer symptoms make me think it might be worthwhile for you.

Your symptoms are more severe than mine so you should find someone to look into endo too. A lap is a small op (I had one years ago) but it does involve a GA and a fair bit of discomfort.

Good luck. I hope you find some answers.

[StrawberryShore]

Thanks so much eurochick. That's really interesting. Would you say the laparoscopy is a good idea at this stage? I am pretty scared but it seems to be the only thing that will tell one way or another. It's so difficult, isn't it, to make these decisions.

I'd be realy interested to hear how it goes with your immunologist. Wishing you lots of luck!

[eurochick]

Hmm, it's a tricky one. Have a look at a symptoms list for endo but bear in mind some women have it without symptoms. Did you have pain during your internal (or during se*)? I won't pretend the lap was a fun experience, but I would have another if I had indicators for it, but not on the offchance that it might help, I think.

Thanks. The thread about Prednislone (sp?) is full of women pursuing the immunology route although I think they all have confirmed miscarriages (except me). But I have learned a lot from reading those posts so if you are interested take a look.

[StrawberryShore]

I think that approach is kind of where I'm at but it's helpful to hear someone else say it too - especially who's had a lap before. There seem to be enough symptoms that warrant having the lap so I guess I'll really have to consider it.

Thinking about it now, I often have excruciating pain with internal exams though not with se* - I've always put it down to being tense during the smear test situation etc. But maybe it's not that...

I'l have a look at the other threads.

Thanks again!

[AttilaTheMeerkat]

Hi Strawberry

I read your monthly symptoms and even before you wrote the word endometriosis I thought of that. I note too you've always had very painful periods - yet another indicator. Any pain that is cyclical in nature and gets worse up to and including menses should be checked out thoroughly to see if endo is indeed present. It is the second most common gynae problem seen in women after fibroids. I had many of the classic symptoms of endo (my symptoms were very painful periods both up to and during menses, brown blood in menses, pains down front and back of both legs to name but three) and went undiagnosed for years so I would not want anyone else to suffer that particular fate.

I would certainly find another gynae to talk with - certainly not the last one you saw because of her attitude. There are good gynaes out there who will properly listen. //www.endo.org.uk is a good website.

It is all too easy to be fobbed off and you will need to be persistant in order to get answers.

[AttilaTheMeerkat]

I have had laparoscopic type surgery (diathermy) and this did detect the endometriosis. Was terrified of having such surgery but had not choice and was glad to have had the op. Saw pictures of my uterus about a week post op and you could see the endo deposits clearly.

I cannot stress enough the importance of finding a decent gynae with up to date knowledge and a specialist interest in endo; you need to find such a specialist. The person you saw previously was clearly neither.

Do not delay unduly; find another gynae and seek a second opinion.

[StrawberryShore]

HI ATM

Thanks so much for your comments - they are really helpful! I was going to visit my GP this week so that I could be referred back to the original gynaecologist. Do you happen to know if I can ask to be referred to a particular gynaecologist on the NHS? Or am I looking at having to go privately?

Thanks!

[AttilaTheMeerkat]

You can but ask but it may well depend on the rules that your PCT operate.
and you may well ultimately have to go private. Whichever route you take, do your researches very carefully beforehand. You don't want to see a standard gynae; a gynae with a specialist interest in endo and vast experience in dealing with such patients is preferable.

Hope you receive some answers soon.