I'm new. And now feeling like I'm crazy.

[Colorsplashed]

Hi

Sorry - loooooong introduction, please feel free to skip to the last few paragraphs!!

I have had a pretty bad time of things for nearing 18 months now. To try to be concise - I have always had horrific periods, ever since starting. As a teenager I would vomit and pass out on the bathroom floor every month without fail. The pain was so bad I actually wanted to die so it stopped.

My periods always interfered with work, and about 8/9 years ago, I was finally given the mini pill (Cerazette), which was the best thing to ever happen to me for 2-3 years. Then it stopped working - I started bleeding again and started getting emotional pre-menstrual symptoms for the first time. I came off the pill, all the pain came back, and I was eventually given the Mirena coil.

After 6 months with the coil, the worsened pain after having it inserted was still there, and after a year I had gone from one week of pain per month, to three or four weeks. A scan revealed nothing, so I had the coil removed.

Nothing improved - I was getting intense cramping almost all month, alongside all of my other usual period symptoms (sickness, backache, migraines, etc, etc, etc.). I tried the mini pill again, but no joy - after 6 months I was still bleeding more rather than less (at least half the month bleeding, sometimes more). So I recently stopped this again as well.

I saw a gynaecologist about a year ago, who was annoyed by my doctor's referral letter being too long, gave me a very painful internal exam without warning, and dismissed that I was anything to do with her after asking all of two questions about my symptoms. I tried to explain my history, but she wasn't interested and sent me to the pain clinic instead.

Long story slightly less long, after seeing the pain clinic, and a bowel specialist, I was referred back to a gynaecologist with the pain having worsened further in the mean time.

For the last two weeks I have been getting very strong stabbing pains in what I thought were my ovaries (right area, both sides), many times in tears from the pain, or unable even to get around my own house. I have been taking co-codomol 30/500 for the pain, but this doesn't even touch the stabbing pains. I got an emergency appointment with my GP last Friday, who said they thought that it was endometriosis, and that (from my symptoms which now include intense pain when my bladder is full) it had spread to my bladder.

YESTERDAY I had my second gynaecologist appointment. I was struggling even to walk around by the time I went, and in intense pain during the long wait. I had an internal scan, which revealed a small cyst on one ovary, but doesn't explain the bladder-related pain or the pain on both sides. During an external exam of my abdomen, the gynaecologist missed the worst spots by a millimetre or two, so my reactions were reasonably mild. I now realise that because of this, she decided that I was exaggerating my pain, told me I wasn't bad enough for an emergency laparoscopy appointment, and the wait would be around three months. I asked her what to do about the pain in the mean time, as it had become so intense, and she told me that 'if it really was that bad' I would have to go to A&E. She also made it clear that I was NOT in enough ('real'?) pain yesterday for that to be needed. I felt embarrassed and left.

Once I told my boyfriend what had happened, he went mad at me for basically screwing up the appointment that we had waited over a year for, and for not saying something during the physical exam (I have a history of being nervous in appointments, and non-confrontational in the extreme, leaving me not speaking out when I should).

Now I feel stuck. I have a wait of another three months (plus), whilst in daily pain that leaves me unable to get around, get outside, work, walk or play with my dog, socialise, drink alcohol, have sex, eat properly (I have lost about 4 stone since this started) or have any normal life at all. AND I feel embarrassed and as though I am making all of this up, or at least that everyone else thinks I am. AND my partner is beyond frustration now. I am barely keeping up even with part time work from home and just feel completely and utterly worthless.

I'm sorry, I know there are no magic answers, and I am not quite sure what I am expecting by writing all of this, but I don't know what to do anymore to the point of not even wanting to be here. I am more of a burden than a help to all of the few people left in my life.

[Starry]

Big gentle hugs for your pain. Xxx

I am so sorry it is affecting your life so much.

Consultants do find it a struggle to empathize and guage pain, their skill is with the knife and scalpel I guess. Bizarrely mine kept over estimating mine as my key daily issue is extreme fatigue that has also left me as incapacitated by different means. I started to write down everything I needed to say before appointments as I kept going blank completely and forgetting things. Do reassure your boyfriend it's totally normal for that to happen in short consultations over such a sensitive and complex disease. He needs to cut you some slack and go into supportive partner mode a bit.

It's so hard in such a overstretched nhs. Would it be possible to send a tweaked version of this post to the gynaes secretary so they know the full extent of impact of your symptoms on your daily life, understand your anxiety and tendency to clam up when seen and ask for a review and to be on the cancellation list?

May be do start going to a and e when the pains that extreme so you get relief and it's recorded on your file (it's evidence of severity to make a case for prioritisation )

Is going private an option if you can't wait?

[Colorsplashed in reply to Starry]

Thank you so much

I am going to follow your advice to the letter about writing things down, and start taking my boyfriend in to any further appointments. He offered to come in with me this time, and I told him he didn't need to (and felt a bit embarrassed about him being in there whilst people insert various things! Bit silly after 8 years together!), which definitely made things worse. Lesson learnt.

I would love to go private, and miss my old insurance that I had with a previous job, but no chance this time - I have no insurance now and definitely can't afford the costs. Stuck with the NHS, which I love, but which is now stretched to the extent that genuine pain is regarded with such suspicion... I just wish it was possible to see a doctor, describe the pain and the extent of it, and be believed and treated.

As it, I might just become a semi-regular face at A&E!

[Starry in reply to Colorsplashed]

Np xx just a few ideas. I learned the same lesson. As soon as the severity became clear my partner also of about 8 years started joining my appointments and it's been a team effort ever since. Its helped him understand a lot better too, and I think we've worked though the strains it's put on our relationship a bit better as a result too.

Yes I was lucky with employer insurance this last time. Its just running out now so I'm nervous about the future.

Good luck and hang in there. Xx

[lol2806]

I’m sorry this is happening. Your GP is required to support your care whilst you are waiting to have your lap under a shared care agreement with the gynaecologist. You can ask for medication to help control the bleeding if this is still an issue (Tranexamic Acid can help to reduce the amount of blood, Provera or Norethistone are hormones that can also help). In terms of pain, your GP can prescribe stronger painkillers to take alongside the co-codamol to relieve the pain (for example, I take Amitriptyline at night which has really helped but there are others such as NSAIDs (e.g Ibuprofen). Take care of yourself. X

[luthien]

Oh dear, sounds awful

You should never feel that your life isn't worth it, your life is precious, special and unique. To quote Cat Stevens "You're only dancin' on this earth for a short while". Don't think about others, focus on yourself, what you need / want; it may just be in the right place at the right time sort of thing.

I'm not a believe in a higher being person but I do feel things happen for a purpose; sometimes we only find out that purpose after. I've found my endo has made me consider focussing on myself, my health and be less concerned with others and what they think, or how much I always put myself out there to help my friends; this is my time.

You are entitled to a second opinion; others on here have mentioned the BSGE clinics that you can get referred to via your gp, perhaps look into that. I went private as it's covered by work so possibly one of the other ladies on here can advise about the BSGE route.

Keep a diary of how you're feeling each day (headaches, sick, pain - where?), have a scale for pain and record it, add in period, ovulation etc, even put in mental feelings on life. It will help a specialist get a picture of how you're feeling throughout your cycle.

Perhaps ask your partner or another close friend / family to come along to the appointments when you get your new referral, as it will help your confidence, they can be assertive on your behalf and say how they see you on your bad days, and it helps them to understand what you're going through. My oh comes along to my appointments and it helps me be more confident, plus there's two people listening if you miss something; you shouldn't have to suffer on your own. It feels weird asking your partner if he'd come along, as why would he? it's women's stuff surely? well no, it affects you, your relationship and him, it may actually bring you together as he'll see it's serious and will feel important, which he is to you

The endometriosis uk website has a section for support, there are local representatives whom you can call and talk to, they can provide you with the mental support and we are all here.

Keep us updated with what goes on xx

[Colorsplashed]

Thank you SO MUCH for the replies - I'm damp of eye now as a result of people having a positive response to me!!

And thank you all for the suggestions - they are very sensible, and include things I either hadn't even thought of, or were probably at the back of my mind, but I haven't done.

An email to the clinic's admin is a wonderful idea, as is the full detailed diary of everything as I go. I will also start going to A&E when I need to (does anyone do anything to avoid this because of how exhausted they are?), and my boyfriend is now coming in with me to every appointment possible!

Really - thank you for the replies, this is the first time since coming out of the consultant's office that I actually feel less crazy!

xxxx

[luthien]

Yay go you!!!

[Boodie]

Hi there, im so sorry to hear of ypur pain and struggles. I too have suffered with my periods with very bad excruciating pain and vomiting. In dec 2015 I was diagnosed with pelvic inflammatory disease via a lap.they found scar tissue inflammation my insides were swollen and I was in a lot of pain. I initially had fluid found on my fallopian tube and was trying to conceive at the time for a number of years with no joy.

Have you had swabs to check for infection?

If not, you can make an appointment with the GUM clinic, you should get in fairly quickly with an appointment.

If all ok with no infections then next step I would take is to find out the email address for your gyne secretary or your gyne direct if need be. Start by writing down your symptoms, time period, reiterate you have no quality of life at present and you are in need of help. Apologise you did not express yourself well on the last appointment. Ask would it be possible to have a follow up continuation appointment. If you can afford it, ask can you pay for a consult. Take someone with you for moral support, someone who can speak for you when you can't get the words out. You need to be swerving them to do a lap as soon as possible as so far you have not had a diagnosis. Be firm but polite,if you need to cry, cry. They have a duty of care and if you find they wont budge then refer back to your GP.

Do you have the facility to be referred to another gyne ?

Message me anytime. I really hope you get sorted out. Don't despair there are options but you need someone else in your corner.

Xx

[JellyKat]

I think it can be normal to clam up when seeing a specialist- after all, you go in there expecting them to be able (& willing, at least!) to help - them being so terse and dismissive of you can blindside you! (Plus they’re the experts, it’s not easy to argue!)

I agree with the pain diaries as others have said. Even I thought “it’s not THAT bad I suppose” when seeing the gynaecologist on a good day, but when I look back and see that actually, there were only 5 days in 35 that I wasn’t in pain, it’s a really useful tool.