A&E

[Kazww]

After 6 weeks of severe pain in both hips, back and pelvis, bloating/swelling abdomen, constant diarrhea or constipation, an ultrasound that revealed nothing but thickened lining of the uterus and fluid that shouldn't be there I finally took myself to A&E on Friday.

I got to see a gynaecologist who after examining me said I need to have a hysteroscopy and also need to ask my doctor to investigate my bowls as he thinks everything looks healthy around my ovaries etc.

Could a problem with my bowls really cause so much pain in my hips and pelvis (most of pain is where uterus is) pain in hips is like someone's pushing down on my hips and pushing them apart.

What to expect from hysteroscopy? Started period on Friday too the pain has been worse than ever this weekend. X

[confusedandworried]

Hi, I'm sorry your experiencing this. I wondered if it might be worth looking at Adenomyosis as the symptoms are similar.

I have endometriosis and suspected Adeno as well. Adeno is similar to endo but involves the uterus / muscle of the uterus where endo does not.

Unfortunately adeno is difficult to diagnose. It can sometimes be picked up on a scan showing an enlarged or bulky uterus, sometimes it doesn't. An internal exam might reveal an enlarged and/or tender uterus (mine felt like I was being poked by a knife). A biopsy obtained through hysteroscopy may reveal Adeno but again may not, particularly if the Adeno is diffused as the consultant has no way of knowing where to take the biopsy from. Also the biopsy is so small it maybe that bit of tissue taken was unaffected.

I had a hysteroscopy at the same time I had a laparoscopy so it was done under a general anaesthetic. However I believe it can also be done under a local or with some other pain relief. After a very painful internal I think the consultant realised he'd have to knock me out to do the hysteroscopy anyway! I believe they pass a tube with a camera up through your cervix and into your uterus to have a look (the hysteroscopy part). If they want a biopsy also they then pass another tube/instrument into the uterus which then takes a very small piece of tissue for analysis.

Unfortunately the only cure for Adeno is a hyserectomy (ie removal of the uterus). My consultant also believes a total hysterectomy (ie removal of the uterus and cervix) is the best way as Adeno could affect the cervix given the cervix is technically part of the uterus (ie it is the neck of the uterus).

Women who are not ready for a hysterectomy can try pain relief options.

Unfortunately Adeno often can't be diagnosed until after hysterectomy and even then they wouldn't analyse all of the uterus so again it is possible to miss.

Adeno is quite often diagnosed when other potential suspects have been ruled out and symptoms fit.

I hope this helps.

Best wishes

[Kazww in reply to confusedandworried]

I would be happy to happy a hysterectomy I'm 39 I had my kids when I was young and I've been sterilised. I can not carry on like this the pain is getting worse I'm now at the point where I don't want to eat anything feel sick all the time my tummy is swollen all the time and the pain in my hips back and uterus is unbearable!! I've been off work for 3 weeks now and in pain for 6 weeks and still no closer to a diagnosis. I feel like I'm just getting weaker and feel more poorly every day! Feeling so down how long do hysteroscopy appointments take to come through?

Thanks for your message it's good to hear other people's stories xx

[confusedandworried in reply to Kazww]

Hi, again I'm so sorry you're in so much pain. Of course it may not be Adeno, I'm just suggesting it may be another avenue to explore as I hadn't even heard of it before my consultant mentioned it. And my GP never even thought of it , they just thought all my symptoms were down to my endo. Unfortunately women's body's are too complicated really and one set of symtpoms can match a variety of issues - Sod's law! I have decided I'm definitely coming back as man if there's a next time 😜.

If Adeno is a possibility for the record my consultant is adamant women's ovaries should be preserved wherever possible due to the health benefits.

Unfortunately I can't advise on the waiting times for hysteroscopy as I am very fortunate to have private health insurance still so was referred to a private consultant.

Having suffered from endo for 20 years and having 5 laparoscopies and various hormone treatments and pain killers I did my research this time and found the name of a private consultant who has come highly recommended from a number of women on this and other forums.

The last consultant I saw for endo offered me hysterectomy or tramadol as his last options. Hysterectomy does not cure endo and I didn't want to be on pain killers for the rest of my life.

The new consultant I am under is considered by many as being the best in his field. I'm wondering if it might be worth/be an option for you to have a one off private consultation with him to see what he thinks? I think a consultation cost £350. Also if he suggested a diagnostic laparoscopy and hysteroscopy I think this is in the region of £3000. Obviously I appreciate this is a lot of money and it may not be possible but maybe the initial consultation could throw some ideas out there for your GP to then explore further through the NHS?

I wish you the all the best, Jo.