Log in
Endometriosis UK
41,988 members35,664 posts

Help?! Anyone else have endo without pain during sex/mobile uterus?

Hi ladies, so I’ve just got home from the hospital and my 2nd gyne appointment. Anyone who has read my previous posts may remember I now have a mirena which has stopped the ridiculously heavy bleeding, but I’m still suffering with severe cyclical pain and bowel/bladder issues. My gynaecologist has said he will do a laparoscopy to rule out endo before passing me to gastrointestinal team to see if they think it’s ibs. I have had ibs medication and that has not eliminated the problem. He thinks it could be ‘pms’ symptoms, and probably not endo as 1) I don’t have pain during sex (I have experienced it on occasion but it’s not usual for me, but I always get cramping after sex-or the examination he’s just given me! like I’m about to start my period) and 2) on examination my uterus was mobile-not stuck to anything. He put a lot of emphasis on those two things pointing to no endo.

Don’t get me wrong I’m pleased I’m going have the lap and get some answers, and I hope I don’t have this awful disease causing you guys so much suffering-but now I kinda feel like maybe I’m wasting time, then i remember the pain. This is such a hard time guys xxx

10 Replies
oldestnewest

Hi there

I'm so sorry to hear you're suffering and it does sound like you have endo.

I was diagnosed with severe rectovaginal endometriosis in September last year after a lap and MRI scan. After waiting 17 years (I first went to see a GP in 2000 with obvious endo symptoms which were dismissed) I've now been told I'll need to have a hysterectomy and bowel resection because I have a 'mass' of tissue invading both bowel and uterus. My ovaries are also adhered to the surrounding tissue, etc., etc.

Anyway, what I wanted to say was that I have NEVER experienced any pain during sex in my life. I'm sorry to say that your gynae sounds as though he really doesn't have his facts straight (also sorry to say that this doesn't surprise me in the least....😒). I also wouldn't rely on his manual examination of your uterus...if your gynae isn't an endo expert he may well have missed some obvious symptoms.

If I were you I'd insist on making an appointment with an endo expert straightaway rather than wasting your time seeing the gynae - apparently general gynaes don't necessarily receive appropriate training in dealing with endo and are often really ignorant about the disease (you'll find that most women who contribute to this website know more about the disease than your average gynae). You'll be able to find your nearest endo centre via this link: bsge.org.uk/centre/

I honestly wouldn't waste your time any further with the gynae and going down the IBS route. I was referred to a bowel specialist at my local hospital back in 2013 (my GP thought I had bowel cancer because I had rectal bleeding and severe pain every time I had a period....again total incompetence!!! If I had bowel cancer surely I'd have these symptoms all the way through the month, not just when I have a period??!!! Doh!!!!!) and the bowel expert's conclusion was that I had constipation....he prescribed me laxatives and told me not to eat any fibre.....(this is an 'expert'??!!!). Unfortunately this totally misinformed and ignorant diagnosis effectively stopped me from having much needed treatment and led to years of needless suffering.

Some women here have reported that it may be worth forking out some money initially to pay for a quick appointment to see an endo expert. Apparently this can cost between £150-£200. After this initial private appointment, you can then go back onto an NHS waiting list. I'm afraid to say that you usually have to wait for an appointment for a ridiculously long time.....

Anyway, my best advice from my own experience is not to hang around waiting around for IBS tests to be performed, go and see an endo expert as soon as you can.

Wishing you all the very best moving forward, xx

Reply

Awwww thanks so much for your reply, I honestly do not know what I would do without you ladies. So he has booked me onto his surgery list (12-18 weeks wait which I think is pretty standard) but you’re right, despite the fact that my hospital is a bsge centre, he is not an endo specialist-and I left thinking, really?! I’m wondering though how I would get in touch with one of the specialists privately? I’ve got the afternoon off which is great as I’m coming up to my worst weeks and feeling it, so I may start trawling the net! Again thanks so much for your response and advice xxx

Reply

Hi again!

No problem at all - us endo warriors have to stick together!

Actually I was about to write again and say please ask for an MRI scan to be done before the lap if at all possible. I had my scan after the lap and actually it revealed more about my condition than the lap (the consultant couldn't see much inside because everything was covered in adhesions). The lap for me at least was an awful experience and the only thing the consultant did was remove a polyp - the endo tissue wasn't removed at all. I feel pretty angry to this day that I could have been spared invasive surgery which actually led to me experiencing much worse pain over the next 3 months (I had horrendous uterine contractions where the level of pain was indescribable).

I have also been told that I have adenomyosis even though I've never experienced the same kind of heavy bleeding as you - heavy bleeding is a common symptom of adenomyosis, apparently, so you might want to ask about that too.

Yes, I was also referred to a BSGE Centre right at the beginning although I initially saw someone who wasn't that good (I was even told by the consultant's colleague who saw me first that I was too old to have endo, I obviously had a bowel problem and she almost showed me the door...honestly, you just couldn't make it up.....).

I ended up phoning the lead consultant's secretary at the same hospital after my lap because I wasn't at all happy with the consultant who performed the lap and asked her if she could organise an appointment for me. When I finally saw the lead consultant in January this year he was so much better than anyone else I'd seen previously.

Please don't be like me and just assume that all these medics know what's best for us. For years I've been the perfect patient - passive and respectful and grateful to anyone who could see me. What a shock I've had realising that so many of these so-called experts are totally incompetent and ignorant!!!

Please do insist on seeing the lead consultant if you can and don't take 'no' for an answer...the sooner endo is detected the greater the likelihood of it being treated effectively. If you leave it too long (like me) it can lead to greater complications and can be difficult to treat.

Wishing you all the very best going forward!!! xxx

1 like
Reply

Thanks so so much x

Reply

The facts are that women with endo have 50% chance of pain during sex, so to think that is a requirement for diagnosis is plain incorrect. See the Endometriosis UK website for full facts and studies.

My doctor said the exact same thing to me (including the mobile uterus part as well) but during the laparoscopy that I insisted on having and went private for... they found 'extensive' endometriosis throughout! And then my surgeon had the nerve to ask me again just when I came round following surgery whether it is correct that I don't have pain during sex!? (I mean wtf right?)

I'm so sorry that you are experiencing this, but trust yourself and your own body and pursue the medical help. Good luck to you.

1 like
Reply

Oh my goodness I sometimes just can not believe some of the things I read! I’ve now got a number for a specialist from the same hospital so I’m about to call his secretary to see if I can somehow get him to do the surgery, even if it is a longer wait-I’d rather ensure it is being done properly. Thank you so much for your support, I hope you are well X

Reply

So, I’ve been on the telephone to 2 consultants secretary’s, mine and the endometriosis specialists, and it took some talking but mines secretary has agreed to ask the general gyne to transfer me over to the endo specialist’s. I hate being pushy! But I also feel like I don’t want to go round in circles! Thanks for the inspiration ladies ❤️

Reply

Brilliant news!!! Please don't feel you're being pushy!! You're the one who has to suffer debilitating symptoms which are preventing you from leading a pain-free existence, not the medics - no need to apologise for trying to get the best treatment!! I'm so pleased you were strong and firm - and yes, it does go against the grain to disagree with the so-called 'experts' and to 'push' for things, but if you don't disagree and you don't push for the right treatment you never get anywhere!!

Really wishing you the best of luck going forward. I do hope you manage to see someone who knows their stuff and won't mess you about...and I hope you'll get the treatment you obviously need!

Huge well done!!! XXX

P.S. Please don't forget to ask about having an MRI scan done before a lap....if endo is detected from the MRI, you may only need to have the one lap to remove the endo, rather than having a diagnostic lap followed by another lap to properly treat it....any kind of surgery is likely to lead to further adhesions, so if you can avoid having more than one op, so much the better!

1 like
Reply

Absolutely, I will talk about this to the actual specialist when I hopefully get to see him! Thanks again xxx

Reply

Great, yes, it's well worth doing.

Once again, I'm really, really pleased to hear you got somewhere, just hope you won't have to wait too long for your appointment. At least you're going to see someone who knows their stuff, hopefully.

In the meantime, take good care and try and eat the right things - I've been feeling so much better now that I'm on the endo diet and have been taking supplements - it's making a huge difference to my overall health.

Onwards and upwards!! And massive high five for doing what you did today!!!! 😊😊 XXX

1 like
Reply

You may also like...