Endo/ando??

Ultrasound results show that I have fluid in or around uterus that shouldn't be there and the lining of the uterus is thickend, have to wait now to see a gynaecologist but not until April. Doctor has signed me off work for another week (this will be the 3rd week off work and the 5th week I've been in constant pain)

Symptoms are constant hip and pelvic pain, sometimes have back pain but not always. Bloating and distended abdomen sometimes I look heavily pregnant. I'm also suffering with constipation now not sure if this is due to taking codine or if it's related to everything else.

Anyone had similar symptoms or had similar ultrasound results?

10 Replies

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  • Dear Kazww,

    I have just come across your message and noticed that you have not had any reply to your post. I wonder if you might be interested in some information that Endometriosis UK can offer you.

    I am sending you some general information on endometriosis since you have not had a formal diagnosis as yet but endometriosis is suspected:-

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    Ahead of a consultation with your gynaecologist, you may find it helpful to complete the following forms and bring them along with you. They are quite comprehensive forms that may help explain your symptoms when trying to move things forward with your specialist:-

    endometriosis-uk.org/sites/...

    endometriosis-uk.org/sites/...

    You speak of a bowel related issue so these information packs may be of help:-

    endometriosis-uk.org/sites/...

    bladderandbowelfoundation.org/

    As far as pain management is concerned you may find the following of use. (see page 8 onwards for pain relief options). I have also added a few other external links that include complementary therapies:-

    endometriosis-uk.org/sites/...

    britishpainsociety.org/

    cnhc.org.uk/

    acupuncture.org.uk/

    Finally, Endometriosis UK offer support options that may suit if the diagnosis is confirmed. They are run by trained volunteers that have been touched by endometriosis themselves. They include face-to-face support groups usually run once a month and are countrywide:-

    endometriosis-uk.org/find-l...

    Online support groups are available for those people who are unable to find a support group in their area or who prefer not to attend a face-to-face meeting. They do not use webcams to maintain anonymity. Again, they are usually run monthly:-

    endometriosis-uk.org/online...

    Furthermore, there is a freephone helpline where you can speak in complete confidence:-

    0808 808 2227

    I hope this helps and I wish you well.

    Take care,

    Simonetta, Endometriosis UK

  • Thank you so much for all the info you have sent me I really appreciate it. Can I just ask a couple of questions as I can not seem to find an answer.

    other than having painful and sometimes heavy periods they don't last more than around 5 days and I do not spot or bleed in between periods. I am 39 never had any pain other than the usual abdomen pain usually on first day of period where I wotld need some pain killers and the hot water bottle, until 6 weeks ago when I started with back pain but more pain in my hips and running down from my hips to pelvis in a V. I've also had swelling of my abdomen and constipation and diarrhea. The pain has been constant for 6 weeks and getting worse to the point the co codimol are only effective for 2 hours now. I'm constantly tired and run down haven't been able to work for 3 weeks the pain is becoming unbearable, could this really be endometriosis?????

    I am so worried, my bloods came back fine but the ultrasound should thickend uterus lining and fluid in uterus what could this be?? Thank you so much for taking the time to message me x

  • Hiya, with your symptoms it could be endo but only a lap will be able to diagnose.

    Regarding your thickened endometrium(uterus lining) and the fluid in the uterus, I'd try not to stress about it...I know it's always easier said than done but it's not a very specific finding. Having a thickened endometrium could be causing your heavy periods. When looking at the endometrium on ultrasound, the texture and the outline of it is also looked at as well as the thickness. The thickness can vary depending on where you are in your menstrual cycle. It gets thicker right until your period. Did the GP say how thick is was? Up to 18mm is the measurement usually used before it is classed as 'thickened' in pre-menopausal ladies; however, if it was less than 18mm but looked irregular in outline +/-texture then it would be flagged up with the GP and an urgent gynecological referral would be suggested. With your appointment being in April, it doesn't sound like anything needs to be done urgently...I know it doesn't help you and your symptoms but if there was anything suspicious, you'd be seeing them sooner.

    Having a thickened endometrium can sometimes be caused by endometrial hyperplasia, where the endometrial cells overgrow due to hormone imbalance. A polyp or a fibroid can also make the endometrium look thickened on ultrasound but they can be very difficult to see on ultrasound as they can blend in with the actual endometrium as they have the same texture, even if they are suspected but most ladies have bleeding inbetween periods. The best way to look at the endometrium is a hysteroscopy, which is a tiny camera inserted into the endometrial cavity via the vagina and cervix. The gynecologist can then take biopsies and remove polyps/fibroids if necessary.

    Having fluid in the uterus could most likely be blood or mucous. Having some fluid in your endometrial cavity at various times in your menstrual cycle is normal and doesn't mean anything specific. Can you remember where you were in your cycle at the time of the scan?It can sometimes happen if your cervix has narrowed (cervical stenosis) but it's nothing sinister meaning. This can also be checked and treated at the hysteroscopy if necessary.

    Hope you get some answers at your gynae appointment xx

  • Hi thank you for your reply, I am more worried about my symptoms at the moment than what was found at the ultrasound, 6 weeks or constant pain in my hips pelvis and sometimes back, I have had bloating that goes up and down for weeks sometimes I look pregnant. I've been really constipated on and off for a couple of weeks then last night I started with really bad diohrea which has started again this afternoon. I'm constantly tired and in pain, I have done nothing but lay on the sofa for three weeks now and the pain is getting worse. My last period started on 1st of feb for 4/5 days. I feel like I am going to start my next period anytime now and my scan was on the 20th feb. I'm so scared they may have missed something on the ultrasound 😒 I have never had pain like this it's constant and feels like it starts in my hip bone going down both sides into my pelvis (uterus/ovary area) x

  • Aw hun that sounds horrible! Being bloated, switching from being constipated to diarrhoea and your pain sound bowel related symptoms too. Ultrasound is not good at all for looking at bowel problems. The trouble with endo is that it can affect our bowels so much and it's hard to diagnose whether it is all related to endo or a separate bowel problem or both. If your pain is getting worse and that bad, I'd ring your GP again and get an urgent appointment with them or go to the walk in centre or if it is that extreme go to A&E. They can send you for an urgent CT scan which can check your actual bowels & perhaps perform a colonoscopy. You can get blockages in your bowels that can cause these symptoms but like I said, they're all endo symptoms too so it's difficult. The thing that is concerning is that your pain is getting worse and has come on quite suddenly, I wouldn't be waiting until April to see the gynaecologist if that was the case. You can't carry on like this until then xx

  • Hi thanks for your lovely messages it's so good to talk to someone, I think I am going to have to go to A&E but will they see me? Xx

  • No worries, we all need support :)

    Yes, they have to see you. The fact that your pain is severe and getting worse is the key thing. You shouldn't have to suffer with pain so severe and not be able to go about your normal daily life for this long. You need answers xx

  • H Kazww,

    I just wanted to say that I agree with everything Chopples has said.

    Did you manage to get an urgent appointment with your GP or even arrange a callback?Try calling first thing in the morning and explain how you're going out of your mind with the constant pain and you are unable to function. April is too far away. You either need an appointment sooner or a change of pain medication until you get everything sorted out.

    Yes, you are correct, the co-codamol can cause constipation.

    All the symptoms you list are experienced by women with endo. The variety of symptoms is staggering and they are different for everyone. I completely understand how afraid you must be and while I can't reassure you 100%, your symptoms are classic for endo. Many endo women also experience a sudden onset of severe pain out of the blue. Back pain, pelvic pain, pain down the legs - all very common.

    While you are trying to get things speeded up I strongly recommend that you eliminate gluten and dairy at least in the short term and see if your bowel symptoms ease. I used to get bloating and wind but when I gave up these things a year ago it sorted out the problems. Both these foods are inflammatory and can contribute to pain.

    Sending hugs and good wishes to you. x

  • Thank you so much you are all such lovely people you really are helping me through this, I have had diarrhea since last night on and off all day, pain not as bad as it was yesterday but I'm really bloated tonight I look pregnant again. My partner has said I have to go to A&E tomorrow so that's the plan I am just hoping they see me I can't carry on like this xx thank you so much it's touching to know people you have never met can help you through such a scary horrible time xxx

  • You're welcome.

    Let us know what happens. x

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