Hi :) Does anyone else have similar symptoms?

[em_91]

Hello,

I've just managed to secure a gynaecologist appointment after a few months seeing numerous different doctors and having a few tests done. Luckily saw a GP a few weeks ago that bought up endometriosis without any sort of push. Hallelujah!

Currently I've had all my bloods done, an abdominal ultrasound and a trans-vaginal ultrasound all of which have come back completely normal. Except my uterus is retroverted but the doctor said that is completely normal/common.

I have always suffered from really heavy periods, I've been put on numerous different pills and medications since I was 15. But they all gave me horrible mood swings (depression/anxiety hell). Around a year ago a started taking tranexamic acid which does make the bleeding more manageable. Yay!

I have also suffered very painful periods since I was around 20 (I'm now 28) I thought it was normal to have a lot of pain. I'm still feeling pretty confused as to what it normal and what isn't which is making me feel pretty anxious about going to the gynaecologist.

My symptoms are,

- Painful periods, for around 4 days I have pain that can be bad enough to stop me in my tracks, I have to go to bed and wait for them to pass which usually takes around 3 hours, but the pain often comes back the same day. Ibuprofen used to help but now it rarely does anything. Pain goes around my pelvis, round my back and down my thighs. It can be pretty intense and make me feel nauseous but I am never sick or pass out.

- Heavy periods with lots of clots throughout. Nice...

- Recently periods are irregular and can last for 12 days and can be followed by another a week later.

- Pain throughout the month which is less severe, it feels kind of bruised. I'm also getting sharp/burning/throbbing pain that comes on very suddenly then leave pretty quickly as well. Usually around my ovaries. Sometimes right at the very top of my thighs, sometimes both at the same time.

- I've had problems with my hips for the last year and a half, physio has diagnosed it as hip bursitis on both sides. Treatments which include leg exercise and steroid injections have so far been completely unsuccessful. They haven't currently done any scans of my hips except an x-ray of my back which was normal.

- Other random pain that comes and goes in legs/feet, feels like burning nerve pain? It's a really odd sensation.

- I get some digestive issues around my period but nothing that is really bad.

- I feel tired a lot. not tired enough to sleep but tired enough or basic things to feel like a lot of effort.

I am interested to hear if anyone else has similar symptoms which have either been diagnosed as endometriosis or something else.

As a side note I hope you all eventually find the right doctor/specialist who will give you the treatment you need and deserve. Can't believe it's so hard for some of you to find someone to listen. A few doctors I saw looking pretty baffled and one did tell me I would just have to accept being in pain if my blood tests came back normal, because women just get random pain....... yep....cheers for the great advise! But there are doctors/people who care and want to help, so don't give up. Keep going back.

Sorry for the super long post!

Cheers,

Emma

[dawnat]

Hi. I'm new to this site but your symptoms sound very similar to mine.

I have always suffered with heavy periods and clotting as well as bleeding from the bowel during my period. I get bad stomach cramps the first couple of days too and terrible mood swings and sore breasts the week leading up to my period. I always put this down to what I assumed was just the usual PMS every month.

Over the last 4 months I have suffered with constipation and a constant pain in my lower right back, hip and thigh with a stabbing in my lower right stomach. The doctor referred me for physio which did nothing to help.

Over the last few months I have started with terrible pain in my right side when I ovulate followed by brown and dark red spotting / bleeding for 10 days before my period. This was when my doctor referred me to a gynocologist and the first thing he mentioned was enfometriosis.

I had an ultrasound last week and see my gynocologist in 2 weeks for the results and to discuss a laparoscopy.

I am also constantly tired and have a stabbing / ache in my shoulder which I'm not sure is connected. I also get the occasional dizzy spell and a shortness of breath which the GP thinks is anxiety but I'm going to discuss with my gynocologist at my next appointment just in case!

I hope this helps and you get your appointment with the gynocologist soon.

[em_91 in reply to dawnat]

Hi Dawn, I'm really sorry for the late replyand thankyou so much for responding.

Thats sounds absolutely awful I've just had an mri done on my hips and they have told me I actually don't have hip bursitis and the physio now seems pretty baffled as too what is wrong with my hips.

How did you get on at the gynocologist and did your ultrasound show anything?

Hope you are doing well and your getting somewhere with the nhs.

Thanks again,

Emma

[Clara12]

Yes a lot of what you describe sounds like me. I get horrendous cramps on my period that can completely floor me. They come in waves so I might start to feel it's bearable and then they are back just as bad. They can last the duration of my period sometimes. I get very, very heavy periods. I'm on mefenamic acid which used to work but has been losing its effect lately. I have a docs appt next week and am going to ask for tranexamic as my last period had me leaking like crazy. I couldn't get through meetings at work without having the go to the loo for a tampon/pad change half way through. I have started to have very long periods up to 2 weeks. I have had 2 periods in a month fairly often too. Mine are irregular.

My pain is worst in my abdomin but pains can go into my back, hips and down my thighs.

I get pain out with my period and often it can be severe as if I'm on it. I think this tends to be worse around ovulation. The bruising pain you describe is exactly how I describe my pain once it dies down from the severe cramping.

The exhaustion is horrible. I'm constantly tired and I do feel it affects my work and concerntration. Being in pain so much of the time also has a negative affect. It's a battle with my body.

I am often sick or feel very nauseous and I suffer from an overactive bladder during my period. It's fine out with my period but on it I need to wee frequently and very, very urgently (feel like I can't hold on if I don't go within minutes). This affects me as I can't be somewhere without knowing I can go to the loo when I need to. I used to have a bladder of steel and could hold on for hours.

I'm sorry you are going through this. It's definitely a struggle and I empathise with you. Stay strong and I hope you get some answers.

[em_91 in reply to Clara12]

Hi Clara, thanks for the reply and sorry for the late response.

It sounds like you are having a really hard time Heavy periods are a nightmare and I really relate. I am lucky as I am self employed so work from home but I imagine it is very hard to manage while at work as well.

Sorry you are having to go through such awful stuff and I hope the transanemic acid works for you too! It has made a really big difference for me and I don't seem to have any side effects from it. It doesn't do anything for pain though so that's something to keep in mind.

Thanks again,

Emma

[Hidden]

Hi. Sorry you are going through this. I am new on here too but symptoms similar to mine. Here’s my story: diagnosed with endo 20 yrs ago after having lap. Since then have tried various medications but nothing really worked. Managed to manage it with large amounts of painkillers. However in the last year has got a lot worse. At the same time my anxiety really increased and it’s only now after reading boards like this that I realise my anxiety is linked to this horrid disease. My month goes like this - days 1 and 2 very light bleeding and no pain and then boom , days 3-5 chronic pain. Days 6-7 mild pain and then days 7-14 chronic pain but no bleeding ( this is when our oestrogen levels go right up so it’s feeding the endo) . Then 2 weeks of being ok from pain but then the anxiety starts. The pain I get is around bowel, bladder and particularly right hip and down right leg. read somewhere this could be because my right ovary might be stuck to my bowel. Pain comes in waves and is intense. During those 2 weeks I feel so fed up. I am now on tramadol for pain and sertraline for anxiety but going to come of the anxiety meds as they don’t seem to be doing anything. Waiting to see gynae in June...... x

[em_91]

Hi Lorella, thanks for the reply and sorry for the late response!

I'm so sorry to hear you are struggling with anxiety as well as all the other awful symptoms. Anxiety is so horrible and I really relate. I went to CBD therapy to help with anxiety and found it was really useful in helping to deal with it. I still get anxious but am much more able to recognise when it's coming and stop it from turning into a full blown panic attack. I also found medication made me feel much worse, but I know they can be really shit until you find one that works for you. Be careful coming of them as it can make you feel much worse if you just go cold turkey. I stopped taking them without weaning myself off and fell into a pretty major pit of depression. I would definitely recommend talking to the doctor before you come off as they can lower your dose over a few weeks.

Hope you are feeling a bit better now xx