Endometriosis UK

No pain during sex = No Endometriosis?...

I finally got to see a gynae lady as per a referral and have been sent a letter that she sent to my doctor about my appointment. She says that as she examined me and pushed my stomach and it was not tender, means she really doubts its endo. She also put multiple times that as I do not have pain during sex (dyspareunia) it is highly unlikely that I have endometriosis. I also occasionally have pain passing urine and faeces, but it isn't every time, so she again thinks that it cannot be endo because of that.

I have been suffering for 5 years now with severe pain and extremely heavy bleeding and now I feel that Im again at a loose end.

I was wondering if anyone had endo and does not have pain during sex, passing urine or faeces, as my GP says she would put still put money on me having it.

23 Replies
oldestnewest

Hi there. What a load of rubbish to say not endo as no pain during sex. I don't but was diagnosed with severe endo in July (covers bowel, bladder,uterus etc) did she even do internal scan? please push for a lap too it will let u know for def & get the best treatment for you good luck x

1 like
Reply

Hi lovely,

I dont have pain during sex (thank god!) haha and i dont ALWAYS get pain when ging to the toilet, usually its if its around the time i would be due or (tmi?!) if ive been a bit constipated and going "disturbs" things.

Ultrasound showed my ovary attatched to uterus and possible bowel which is suspected to eb due to endo. I have also had the pains for years. gone back and forth to doctors, been blamed on IBS the fact i have meckels diverticulum, and for the last 3 years "deal with it its a period" pretty much, i put my foot down and demanded a scan.

My surgery is tomorrow, dont let people fob you off you know your body xxx

Reply

Hi, I never had pain during sex or going to the toilet and I just had a lap to treat, severe endometriosis. The op lasted almost 6 hours so it was quite bad and I had endo everywhere including my bowels! While my gynae said I was lucky that with the stage my condition I did not suffer those symtoms but you can definetely have endo without them. We are all different and your gynae should not be saying that to you as it is not true x

1 like
Reply

Nonsense! I have endo sticking my bladder and uterus together, 90% covering one ovary, 5% the other one also found in the pouch of Douglas and my appendix is stuck to my ovary. I do not have any pain during sex or when I go to the loo. Endo cannot usually be diagnosed without a laparoscopy. The only thing that could be seen prior to my lap was an endometrioma on my ovary which was visible during a trans-vaginal scan.

I had severe pain with my period and heavy bleeding for four years before I got anywhere with my GP. Just got painkillers and swabs for STD’s! From what I’ve read on here it really is luck of the draw what response you get from a GP or Gyne. Some are great some not so great! If you’re at a dead end one route I’ve seen suggested is to see an Endo Specialist privately (about £200ish). If they recommend a lap you can ask to be referred back to the NHS for this. You can find a list of accredited centres here; bsge.org.uk/ec-BSGE-accredi...

I hope you get somewhere soon! xx

Reply

Hello - I was recently diagnosed with endometriosis after a laparoscopy to remove an ovarian cyst. I only had a little bit of pain during sex (depending on position) but nothing that ever gave me concern and my periods were fine. I also didn't have pain when going to the loo. Having done a lot of research recently I understand it's very difficult to actually diagnose endometriosis without a laparoscopy because you can have it mildly with lots of symptoms and quite badly with hardly any symptoms and anywhere inbetween. Keep pushing your doctors to take it seriously and good luck x

Reply

Wish docs would think before they speak. Not everyone with endo has pain during sex and some women have pain for other reasons such as PID. It can vary from women to women and can be painful only in certain positions or at certain parts of the cycle. Did they do or are they arranging a TVS?

Reply

Grrrr, GP's & consultants lack of understanding of endo drives me mad! I'm so sorry you are having to fight like this. I also never had painful sex. I was told by a consultant at the hospital (after I demanded to be referred!) that because I had regular periods it couldn't be endo & that I was just unlucky. 6 months later I started to bleed inbetween periods, was referred to a different consultant who did an internal scan & found a large endometrioma! The consultant was amazed that I had been surviving on ibuprofen & I had to explain to him that I hadn't been coping at all & that, funnily enough, I had been living in tremendous pain for years! My lap showed I also had it in one of my fallopian tubes which wasn't removed because we are TTC.

I hate the idea of you having to pay privately for something that the NHS should be dealing with however I do agree with Vickal's suggestion of seeing an endo specialist. If you can afford it it will save you time & possibly more pain in the future.

Good luck! Xx

Reply

This woman is wrong! You don't have to have painful sex to have endo! It's ridiculous what these people come out with! Every woman with endo will have a slightly different experience. It doesn't sound as if this gynae is experienced in endo and I would find someone else who does to be your dr. It's a serious condition that needs Simons will skills and up to date information.

Sorry for my tone but it makes me so cross when 'specialists' don't help. They are paid qualified practitioners who should be giving us the correct info! Good luck xx

Reply

I'm sorry to hear about your appointment. When I first had pain in my stomach I spoke to my family planning nurse and she put it down to the contraception I was using and swapped this. The pain continued and I knew something wasn't right. I had such horrid pains in my stomach, hip and lower back. I went to a doctor after speaking to a lady at work who suggested endometriosis. The doctor fobbed me off and said I had a slipped disc and printed me off a sheet of exercises to do for 2 weeks to sort this out. He wouldn't discuss anything to do with periods, ovaries etc. I booked an appointment and luckily got a very helpful doctor who did an internal check and put me on antibiotics to rule out any infections and suggested if this doesn't work a ultrasound and then an appointment at the gynaecology department. Luckily I got booked in within a week of my ultra sound result to the gynae. I think there really is a difference in the doctors you see and there should be something done about this. At the end of the day it is your body and health it shouldn't have to be pot luck with what doctor you see. I hope you get it sorted, I have a friend who has no pains at all but actually had endo all over and it made it hard to have children. Please keep trying x

1 like
Reply

Hi Hun

I never had pain during sex either and like you suffer with heavy and painful periods to the point that I can't work I can't walk normally days 1-2 of period then by day 4 gets slightly better - was diagnosed with endo a month ago in emergency op I had ruptured endo cyst and they got rid of it for me - waiting for gyne in jan to trial the mirena cool I should think. I would get a second opinion. I feel low time of ovulation I also have horrendous pms like depression its horrible. Good luck Hun x

Reply

Everyone is right! You must insist of another gyne or even endom specialist. It makes me cross that they dismiss endo if you haven't got ALL the symptoms. Everyone is different and women's bodies are so complex I can't believe the gyne didn't even offer a diagnostic lap or scan. All through my 20s, and 30s I really only had the symptoms of extremely heavy and painful periods and fatigue, back then I had never heard of endo and it appears none of the GPs I saw had either! I was never even offered a gyne appointment. Maybe I should have pushed for one. But all those years ago I had never heard of endo. Two years ago I couldn't get pregnant, I was fobbed off with IBS and had a few bloods done. That was it! I finally broke down, another 6 months on & still not pregnant, in the local surgery and said I'm nearly 40 what am I going to do! I was sent for a scan, they could see I was riddled with Endom and during my first diagnostic lap it was so bad with organs stuck to eachother I was referred to an Endom specialist who operated on me with a bowel surgeon present too.

You must keep going back and maybe insist on a scan if they won't send you straight away for a lap. The lack of knowledge by GPs years ago (or maybe because I didn't have ALL the symptoms) has cost me my fertility. The endom has ruined my insides because it was diagnosed so late, 40 in the end! I've had one failed IVF attempt but will be trying again next year.

I don't want to scare you or worry you. But only to highlight how you have to push things and insist on further investigations. We pay into this country every month and yet we are prevented sometimes from getting the care and advice we're entitled to

Ok rant over! In a lot of endo pain at the moment as due on next week so maybe not the best time to post about mis-diagnosis of endo!

Take care and I hope you get some answers soon. Merry Christmas xx

1 like
Reply

Hi there if possible see if you can get referred to have a laproscopic investigation . That is the only way to know what is really going on inside your body . I had similar symptoms and my gp also said probably nothing. Not trying to scare you but when I had mine done they found a 6 inch cyst on my ovary and several larger fibroids one of which was stuck to my appendix! Also told my uterine cavity is covered in endo. Been given zoladex injection which will last 3 months to shrink fibroids and dry up endo but looking set hysterectomy . Please do insist on a referral as your go can not possibly know what is going on inside your body . Good luck x

Reply

I don't have pain during sex and have just had endo confirmed with lap. I also got told my pain "isn't cyclical enough to be endometriosis" and " most people with endometriosis don't describe a burning pain". Nothing showed up when I had Transvaginal scan and I have endo on my bladder(and possibly in it but that will be investigated soon!)

You know your body. They can't rule endo out unless a lap is done. It's the only official way to tell. I'm so glad I pushed for my lap because finally they are taking me seriously.

Keep fighting!!

*hugs*

xx

Reply

I was diagnosed with endo first in 2009. I never had any pain during sex and it took me 6 months to get a referral and another 6 months to get a diagnosis...big surpirse, Endo!

I was treated and all seamed well until a few months ago Instarted getting pain during sex. This time I was lucky enough to get referred straight away. Keep on at them. Painful sex can depends on where the endo is or position or partner or anything!

Hope you're getting somewhere xx

Reply

I was diagnosed with endo first in 2009. I never had any pain during sex and it took me 6 months to get a referral and another 6 months to get a diagnosis...big surpirse, Endo!

I was treated and all seamed well until a few months ago Instarted getting pain during sex. This time I was lucky enough to get referred straight away. Keep on at them. Painful sex can depends on where the endo is or position or partner or anything!

Hope you're getting somewhere xx

Reply

There are plenty of cases in which endo causes no pain, but that doesn't mean it's not there. As far as I've ever heard, a lot of women who have no pain form it often have stage-4 form it destroying the nerves, but again, that's just what I've heard. I personally don't take a doctor's opinion on such a thing seriously if they don't document it--they need something to reference so that there's something to compare to or something to follow if you seek a second opinion.

I've been told something similar before when they questioned the laparoscopy just because they personally don't like the doctor, but if they have doubts, then they should take the initiative to took for themselves.

Likewise, just because you miss one or two symptoms doesn't mean it's not there. If they keep insisting, you may need to go to a different doctor.

Reply

I hate when I get these questions! I have confirmed endo from laps done in 1997, 1999, 2002, and a total hysterectomy in 2003 for adenomyosis and endo, and now in 2015 again. Most times I did have pain during sex because I has a cervix and a uterus then. But now I don't and they still ask me that question and doubt that it's endo causing my pain. You need confirmation of endo by laporoscopy. There is no diagnostic tool that has ever helped me and I've had them done repeatedly over 5 decades. It could also be other things like ovarian cysts, adhesions and sucgh that also don't put up any red flags with other diagnostic tests. Doctors will try and stall you are make you give up because there is no money in performing these surgeries. They will try and provide alternatives to surgery like the pill or worse but it doesn't treat the disease. Surgeries are frowned upon because they can cause further harm by scarring and adhesion formation which also can cause excrutiating pain. It is a matter of quality of life. If you appear you can get on with just some birth control pills and a few pain killers when the time comes periodically haha no pun intended, but with some it comes much more often and the side effects from taking pain killers to dull the pain can be quite harmful to other organs especially the GI tract. You have to ask yourself can you live with this. Is it interferring with your ability to perform daily tasks, is it robbing you from a career, a family life, an education, happiness. Ultimately they cannot deny you care and treatment. You may have reservations yourself but get the right care from the right specialists. You need to ask for a referral to meet with someone listed on these maps. If it is endo or adeno you needed corrected properly by an "excision" expert. This i've come to understand in my fifth decade now with this disease. I still have yet to get excised correctly. Good luck and move on to someone who understands this disease better.

endo-resolved.com/endometri...

google.com/maps/d/viewer?mi...

Reply

Givemeananswer - did you have removal of ovaries with hysterectomy? It sounds like you have had an uphill battle with all of this I'm hoping my radical hysterectomy gives me more of a pain free life now and so far so good :-) x

Reply

sorry I am just seeing your post now Bevsymon, I had adenomyosis, which is why i had my uterus and cervix out in 2003. The cervix more so because i had pre-cancerous cell changes prior and to lower the risk of developing cervical cancer in the future. I was age 39, i wanted my right ovary out at the time but she told me they only take both or not at all. I am just recalling how silly that sounds today! Anyways i wanted to retain at least one ovary for the purpose of A) not requiring hrt I am chemically intolerant so cant take hormone pills B) I know it is necessary for bone and heart health unless you take hrt I'm trying to not make this long but its difficult. Hysterectomy does not treat endo, menopause does not pause endo. It has to be excised. at least that is what I've come to learn recently. I'm sorry, I have just lost my right ovary and tube due to adhesions and cysts. A spot of endo was underneath it. It has not been adressed. I can now a) get it excised with another surgery and then go on hrt or B) live in pain & take hrt and there is also the chance that I will need more surgery down the road if it causes be more adhesion formation, I don't know if cyst can develop without an ovary however. (?) He managed to salvage my left ovary that was adhered to my pelvic brim. I suspect it's either not funtioning yet again or it simply won't ever again, I am in surgical menopause. Or at least appear to be with drastic chills and hot flashes. I see my doc for follow up in two weeks. Thanks for asking Im sorry if I have offended you because I know it differs from what your specialist told you. If you would like to find helpful resources, please check out the endopaedia web site.

Reply

Hi, I have stage 3 endo and I don't always get pain during sex, however sometimes I do. I do however get severe pain when going to the toilet, particularly a number 2. On my last lap a nodule was found on the back of my vagina, in the pouch of douglas. As this is so close to my bowel, my consultant said this is what is the cause of my pain during sex and going to the toilet. I also had a nodule on my right ureter. This is what causes the pain in my right side and the cause of so many uti's and kidney infections. As I had been on the pill for approx. 9/10 months the rest of the endo had shrivelled up and there was nothing really left to remove. But, these adhesions or nodules then go on to produce their own oestrogen and therefore the pill has no effect on them.

My consultant is one of the best in the country and luckily for me, if it wasn't for her this would have gone un-noticed as it has done previously on 2 other occasions and even with the registrar she had with her during the operation.

It took me 6 years to be properly diagnosed, after years of being told it was pid, then just period pains, ibs and blamed it on kidney stones that I had for over 2 years. It wasn't until I was finally clear of the kidney stones they could no longer blame it and instead finally listened to me and referred me back to a gynaecologist who diagnosed it.

Reply

I did have endo excised off bowel and badder and adhesions untangled along with hysterectomy which is probably why my pains have gone. Back at hospital this morning as my scar was t healing so well fingers crossed it is now! I know I may need further laparoscopies in future but enjoying my pain free recovery :-) x

Reply

I had lapo surgery a week ago to remove a cyst. No pain during sex, or passing urine/ bowel movement or heavy periods. After the surgery the surgeon told me they also removed stage 3 endo from ovaries, bladder and most of uterus. He explained that severity of endo didn't necessarily equal severe pain and vice versa. I never knew I had it as all that showed up on scan was cyst. Listen to your body and push for investigative lapto, it's the only way to know. Good luck.

Reply

Change your GP.

I've been told by GPs for 24 years that it's not endo. They don't have a clue what they're talking about. They are just general practitioners. You need to see a gynaecologist. Not that they are always right either but at least you'd have more luck with one.

I've been pushing to see one for months.

I don't know why GPs are so apathetic to their patients suffering. But sadly most of them are. If it's possible get a second opinion. GPs aren't infallible.

Any health care professional with half a brain knows that endo symptoms vary wildly and that not every sufferer gets every symptom. In fact, there are omen either endo who don't even know they have it as they don't have any symptoms. It's usually found by accident. Plus pain and severity of the disease do not always correlate. Someone could have stage 4 and not be in as much pain as someone who only has stage 1 or 2.

I would arm myself with some information before my next appointment regarding these matters.

Good luck.txxx

Reply

You may also like...