Advice

[Rachclaire]

Four weeks I suffered with terrible back/stomach pains, which at the time I put down to constipation/trapped wind. Yesterday I started with bad stabbing pains in my lower back, it was painful to pass wind, and agony to go to the loo. I started with really bad period pains, and was getting sudden urges to wee, which was also painful. It also became painful to walk. I felt like everything was 'falling out' and my legs became achey. I managed to get a bit of sleep with the help of a hot water bottle. Today i woke up in pain and tried to get appointment at doctors, earliest was 27th April. Spoke to NHS direct who advised me to go to A & E. 3 hours later i was sent home with constipation! I dont think it is. My mum had endometriosis and she suffered for years. She had the same symptoms. A urine test showed blood but no sign of inflammation. The pain has eased a bit now, it is more just below the breast bone, I feel really drained. I am 31. Any advice would be great. Thanks.

[Mummy1982]

Hi.

The blood test isn't always a indication mine was fine and I have just been diagnosed with Endometriosis and Adenomyosis. The bad period pain and the ache legs with a heavy feeling inside are symptoms or Endometriosis I've had it chronically for over a year. I also experience a lot of bowel pain I was initially told I had Ibs and sent away that's why it took so long to get this diagnosis . I think as your mum had it there is more chance you have got Endometriosis all the women on my mother's side have Endo or Pcos, my mum had to have a hysterectomy 30 due to the pain and heavy bleeding. I would ask your Gp for a refer to gynaecology. Sorry to hear you are in such pain.

I hope this helps.

Jo x

[Rachclaire in reply to Mummy1982]

Thanks Jo. Its just so frustrating that no one seems to listen, I know the difference between period pain and constipation! Im worried that's its going to take so long and i will be 'left to get on with it'. I has been helpful to find this site so thanks.

[Mummy1982 in reply to Rachclaire]

I completely understand mine feels like a lifetime first I was told I had pulled a muscle?? Honestly then i was constipated then IBS. I know that it's hard to diagnose but I think the bleeding and the bad period pain should be a indicator that it could possibly be endometriosis. The most important thing is to keep going back and telling them it's not getting better and they shod refer you to gynaecological team. I hope you get the help soon I know how hard this battle is to get the help you need.

Jo x

[Anahata]

Hi,

I have literally had all of those symptoms! They all seem to so random that it becomes really worrying, but apparently mine have been because of the endometriosis on my uterosacral ligaments! It's definitely something you should look into. I was also treated for ibs, constipation, poor diet, and cystitis! I totally agree get a referral! I cope by drinking loads of water, having a hot water bottle, using buscopan and paracetamol and complaining a lot!!

Hope u feel better soon x

[Rachclaire in reply to Anahata]

Thanks. Have tried the buscopan and paracetamol, and hot water bottle and a bath helped. Will definitely be nagging for a referral.

[Teem]

Hi I'm the same pain pain pain it used to be just on days I have my period but now it's almost daily I have some good days and most days in bloated, gassy and have major pain in my tummy and anus area and even my legs and lower back and I want to go to the toilet Every 30 minutes or so I can't imagine how life is for someone who has kids or a job!!

I'm trying to get pregnant and each time I do get pregnant all the pain Go's away and I feel my normal self which is amazing but I've had 4 miscarriages and after that the pain come back and becomes worse!

I think there should be more awareness But Endometriosis I self diganosed myself and later went to An especialist.

I would like to know if all u ladies have kids or not? And if ur pain is all the time or just few days a month?

Also I take voltarn 100 when I get pain if pain is very bad then I take the voltarn suppository it really helps.

I also worry about taking strong painkillers I'm sure they are not good for long term use and have many side effects but when I'm pain just need something to help me!

I'm so sorry for all of us dealing with this its not easy maybe God help us all.

Xx

[Mummy1982 in reply to Teem]

Hi. It sounds like you are having a really hard time of it, sorry to hear about your misscarriages that must be awful.The pains you are describing is how my pain is its constant it started at my period and now it is chronic all day and night without painkillers . I had a laparoscopy 4 weeks ago and they diagnosed endo and Adenomyosis. They removed the endo but have been told that they can't remove adenomyosis and that I will most likely need hysterectomy. Yes i have children i have 3 and exhausting with this problem, I think like you said being pregnant kept the pain away. I also worry about taking painkillers all the time what damage it's causing my stomach as I have IBS and sometimes painkillers make my stomach really inflamed. I hope this helps xx

[Rachclaire in reply to Teem]

Im so sorry to hear your problems, You must be having a rubbish time. I have children, 9 & 7. I work, have had a couple of days off this month &last but luckily my boss is a lady and she is brill. And my husband is great,he helps with house &kids so I am really lucky. The pain for me tends to be about 5days before i start my period

[Tboag]

Hi, you need to be refered to a gyne doc, preferable one that specialises in endo, has your doc checked any thing, bloods urine, scan ect.?

If I was you I would write a list of symptoms how ever small,mand take it with you to the docs, if your mum is local, take her with you, you really do need to keep pushing for a refferal,

Good luck

Xxx

[Rachclaire in reply to Tboag]

Thanks. I havent been able to make an appointment, they booked, it really is a nightmare. I have started a diary . The hospital took a urine sample and blood . Will take months for referal & even longer for scans etc!

[Rachclaire in reply to Rachclaire]

Managed to get into doctors. Apparently i dont have constipation, I have a water infection. Sent away with antibiotics.

[Mindstorm]

I had exactly the same thing - agonising pain and told I was constipated. I took laxatives and ended up with pain but diarrhoea as well and was at a different A&E 2 days later who couldn't figure anything out so they gave me painkillers and said persevere with laxatives. This put me into the colo-rectal system but they said all along it wasn't them and tests came back clear. I then tested positive for kidney infections (3 times) so saw urology, too, CT clear. I've now been seen by gynae who said endo, adenomyoma found on scan, probably bowel adhesions and something going on with ovary.

I was recommended to see Gynae by a nice A&E Dr who said she thought I had endo, something about the symptoms and the way I reacted to some painkillers. Your GP can order an ultrasound - mine did that whilst I was waiting for gynae appointment and it meant I got to go there armed with more info. Once I was listed for gynae and colo-rectal I kept ringing up and asking for cancellations and begging for earlier appointments which worked. My gynae I got in 2 weeks earlier and colo-rectal I saw at the end of March and I was not due to be seen by them until May. I am giving it a week for the paperwork to go through from the appointment and I will be calling weekly to chase a lap. It's an utter pain but does pay off.

I have pain all the time, nagging low ache that is annoying but I can get on with it. Some days it gets worse so I take low level stuff like Ibuprofen and CoCodamol. I also get massive ripping spasms like someone has punched me with a hot knife. These can go swiftly or last for days. 4 times I have been to A&E for these, they stabilise the pain and send me home. Last time they told me to stack Tramadol, paracetomol and Ibuprofen and seemed annoyed I had not thought of it. Given the lecture I got about driving and things from the pharmacist I thought I had better not.

I take Buscopan 2x daily as this helps. When I get a bad pain if it isn't waning after 2 mins I pop Tramadol or CoCodamol - I've at the stage where I can recognise which of the two I need. Plus I have Tramadol in 50 and 100mg so I have some flexibility. If I am at home I try with the lower painkillers and a hot bath. A microwave hottie works wonders. I also find I am better lying down than sitting up, I guess it is a pressure issue.