Symptoms and a sanity check

Hi, I've not been diagnosed with endo but from research I've done into symptoms I've had over the last 15 yrs I think it would probably explain a lot (i'm 30). I'm currently fighting with my GP to refer me to a gyno. I just thought i'd sanity check with people who have experienced it to see if my symptoms are typical before I continue pushing for diagnosis.

I have had heavy periods all my life although I now have a mirena coil fitted so only experience occasional spotting, i'd easily go through the most absorbent tampon you can get hold of in under an hour on the worst day or two of a period and wouldn't be able to really leave the house without extensive tactical planning. I used to have cramps and lower back pain that accompanied my periods with the pain so bad i have vomited on occasion.

At around the age of 21 I started bleeding after sex and was told I had "erosion" on my cervix where cells from inside the cervix were found on the outside and had treatment to cauterise them.

At around the same time I started experiencing pain in my lower back and right hip radiating towards my knee. I was seen by specialists and had x-rays on both but nothing was found. I was told the pain might be in my head by one specialist and to see a physio by another. I've seen several physios who couldn't find anything wrong, and I have taken up strength training to try and build muscle generally in an attempt to help. I have a dull ache on most days but i can ignore it. However, some days it is bad to the point where I won't be able to walk (particularly if I have danced/run the day before) and there are many nights where it will keep me awake even taking regular painkillers.

I've taken various forms of contraception over the years, none of which particularly agreed with me (shout out to the implant for making me absolutely [this post has been edited to comply with our code of conduct] crazy) and had the coil fitted 4 yrs ago, with the coil fitted my hip pain was less frequent but now it has returned badly along with recurrence of spot bleeding (despite the coil) and bleeding after sex, all within the last year. I should also say that sex can be painful depending on the position.

In addition I had stomach pains, bloating (I looked like I was pregnant) and bad constipation that began last year which I had an ultrasound for but nothing was seen. I self diagnosed through a food diary as the pain coincided with any time i ate anything dairy so have stopped eating any foods like this and unless I eat dairy these symptoms seem to have disappeared.

Each time I've been to the doctors with these symptoms they've treated me like a hypochondriac and none of the many different doctors I've seen over the years seem to be willing to connect these symptoms together at all. Am I right in pushing for further investigation, does this sound like it could be endo?

[Goldencat]

Yes! I've been referred for a laparoscopy after reporting pain and bleeding after sex - was also shown to have cervical etropcian on colposcopy however pain after sex is not normal and should always be investigated - especially with regards to your other symptoms. Is there a reason your GP says they're not referring you? I would change gp and go for a second opinion if I'm honest. Hope that helps xxx

[Hidden in reply to Goldencat]

Thank you for replying, I have switched to another gp now so fingers crossed it'll be better at my next appointment! I'll definitely push for further investigation. Hope you find some answers too xx

[Maxi72]

Hi

Reading your post is like reading my life story over the last 30 years. There are so many similarities including cautery in my early 20s for the same thing and pain in my right hip and in my case buttock. All NHS investigations got me nowhere. Over a 15 year period I spent thousands in Physios, Chiropractors and Osteopaths as most of my symptoms were not abdominal apart from what I had begun to think of as normal period pain. Everyone including me thought it was muscular. Eventually I developed severe ( and I mean off the scale) leg pain which turned out to be nerve compression and I lost motor nerves to my legs. Finally at 42 I have a diagnosis of endometriosis- a rare kind which is sitting on the lumbar sacral plexus of nerves and is too dangerous to operate on. My laparoscopy found it in on my uterosacral ligaments ( a common cause of intercourse pain) and this was removed. I was also found to have adenomyosis. My experience is rare. However you could also have a rare form of endo as it may be on nerves. GPs can be brick walls with this because it doesn’t present typically. Fight to be seen by a BSGE specialist centre and google the NICE guidelines about endo referrals if you haven’t already. It may help you fight to get what you need. Please let me know if I can help you in your fight. Anything to help you get sorted before you reach my age!!

Hugs X

[Hidden in reply to Maxi72]

I'm really sorry you had to experience all of this. Thank you so much for replying, its nice to know that I'm not going mad and that these symptoms are valid and warrant being looked into further. I wasn't aware of the guidelines, thank you for the info, and I've looked up my nearest BSGE centre which is actually only just up the road. I feel much more empowered now to speak to my Dr with more knowledge. Xx

[NW248]

I was treated like a hypochondriac until I was 47, when I found out about endometriosis, knew that was what I had, paid £200 to see a private endometriosis specialist and got diagnosed.

Go back to your GP and insist on being referred to someone one the bsge.org.uk/centre list. Your GP can not refuse to refer you. Do not settle for an average gynae, as they are mostly useless. I was seeing another one just before I got my diagnosis and he didn't even suspect endo.

Also note that it can be diagnosed by an MRI, which will often find endo in places where a lap may not.

[Hidden in reply to NW248]

Thank you for all of the help and information. I didn't realise an MRI could be used in diagnosis. Even if I have to go private to get an answer then it's probably worth it. Still find it hard to believe that so many of us are treated like hypochondriacs in these situations! Xx

[Sez73]

Agree with all the above comments wholeheartedly. I lay undiagnosed for 15years plus with many of the same symptoms you’re experiencing. I’ll eat my hat if you’re not diagnosed with Endo and/or possibly adenomyosis (similar to Endo but occurs within the muscle wall of the uterus) and you may also have a fibroid element going on too.

You are quite right to pursue further to get answers, I was fobbed off for years by countless rubbish GPs who said the pain was all in my head and back pain must be caused by me sitting at my desk wrong! I was finally diagnosed when I went to Australia and the GP questioned why I’d not had further tests when I’d suffered with chronic fatigue for over ten years (the fatigue vanished as soon as the Endo was removed!) I had a laparoscopy and they found I was riddled with stage IV RV Endo, one of the most serious cases they’d seen. I knew all along something was wrong and to this day am so angry I thought useless GPs had to be listened to as they were the ‘professionals’ when in fact they knew nothing.

Push for an appt as the girls above say. If you have to pay privately to see someone then it’ll be the best money you spend as you may finally get some answers. A diagnosis is only the start of the Endo journey, you need to get on board with someone who realised you may have it and works with you to improve your quality of life. I’ve searched worldwide and can tell you it’s one of the most misunderstood illnesses of our time and there are few consultants who really understand it fully. I’ve also learnt no one will help you at a simple GP level so if you can’t eacily get referred put yourself first and see someone pregnant care if you can to at least get you on the road to finding out what’s wrong. Whatever you do..don’t just settle and be fobbed off.

As one of the other lovely ladies mentioned, an MRI can sometimes pick up deeply infiltrating Endo-mine showed my left kidney was nearly shut off by constructions of Endo adhesions around my ureters, it also showed up adenomyosis, a very trained eye may also be able to pick up complications from Endo on an ultrasound but ultimately a laparoscopy is best to get proper answers as to what’s going on.

I wish you all the luck and hope you get answers and in turn much less pain xx

[Hidden in reply to Sez73]

Thank you so much for replying. I feel much more confident now to go ahead and have a frank conversation with my Dr and to push for referral. I'm sorry you had to experience the GPs fobbing you off for so long. I'm pretty amazed by the strength shown by you and all the other women in this forum. Xx

[Sez73 in reply to Hidden]

No problem at all, least I can do is share my experience in the hope my pain is not repeated again. Trust your gut instinct, you sound v wise and you know things aren’t right so push for that referral. By allowing myself to be fobbed off had massive implications from me, I never want to see anyone go through the same so if I can help further in any way just get in touch. Best of luck and thanks for your kind message xx