Video
Voiceover:
Rebecca is suffering with a gynaecological problem which makes it extremely painful when having sex.
Rebecca:
I just get a burning, stinging sensation, which is really uncomfortable for about an hour, sometimes up to an hour afterwards.
Voiceover:
Dr Pixie swabbed her in order to eliminate any sexually transmitted infections. Our microbiologist Val has the results.
Professor Val:
Well, the good news here is everything’s come back as negative for Rebecca. There’s only normal bacteria in her swabs. So there must be something else causing her problems.
Voiceover:
As she is all clear, Dr Pixie sends Rebecca to see gynaecologist Tyrone Carpenter to get to the bottom of her pain.
Mr Carpenter:
What I’d like to do…I think we need to examine you.
Rebecca:
Yeah.
Mr Carpenter:
And really what I’m trying to tease out is where the pain, I guess, is coming from. So we’re going to start on the outside, and I’m going to use a cotton bud and I’m going to touch various areas, and I’d like you to give me a pain score. So, zero’s no pain, and ten’s the worst pain you could possibly imagine. And then we need to examine you internally, and we’ll use a similar scoring system, um, on the inside.
Mr Carpenter:
Could you give me a number for that?
Rebecca:
About five.
Mr Carpenter:
About five, okay. And I’m just going to stretch the ligaments at the back of the womb now. Could you give me a number for that?
Rebecca:
About seven.
Mr Carpenter:
About seven. And one more thing, I’m just going to put the womb on a stretch one way…sorry, let me do that again, could you give me a number for that?
Rebecca:
About five.
Mr Carpenter:
About five. Okay, that’s fantastic, pop your things back on, come through and we’ll have a chat. Okay?
Rebecca:
Thank you.
Mr Carpenter:
Well, having examined you, I’m beginning to wonder if perhaps, the pain is started from somewhere else, beginning on the inside, and you’ve developed a learnt response to the pain—whereby you anticipate pain, and that causes a superficial pain.
Rebecca:
Okay.
Mr Carpenter:
Now the most common cause for pain deep on the inside with intercourse is endometriosis.
Rebecca:
Okay.
Voiceover:
Endometriosis is thought to affect around two million women in the UK. It’s a condition where cells like the ones lining the womb are found elsewhere in the body. During the monthly cycle, hormones stimulate the endometriosis, causing it to grow, then break down and bleed. This internal bleeding, unlike a period, has no way of leaving the body, and leads to inflammation and pain.
Voiceover:
A week later, and it’s the day of Rebecca’s operation to look for the cause of her pain, and she’s hoping that Mr Carpenter will be able to provide her with some answers. She is undergoing a procedure which is carried out using keyhole, or laparoscopic, surgery. Mr Carpenter begins by inflating Rebecca’s abdomen with carbon dioxide…
Mr Carpenter:
Gas on, please.
Voiceover:
...so he can see her organs more clearly and has space in which to move his instruments. Next, he inserts a camera into the area, and then manipulates his instruments in and around the ovaries and uterus to inspect the tissue.
Mr Carpenter:
What we do is gently lift the ovary and look underneath to see if there’s any disease under there. And that’s all normal. Um, same on the other side, here’s her left ovary here. Ah, and we’re just trying to move it up, and it doesn’t want to move very easily, and we can see there’s some disease there.
Voiceover:
Mr Carpenter has found endometriosis, which is where cells from the womb are found elsewhere. Finally, after five years, Rebecca has an answer for her pain. As well as under her left ovary, Mr Carpenter finds endometriosis in front of and behind Rebecca’s womb.
Mr Carpenter:
Here’s a classic bit of endometriosis here, you can see it’s, it’s pulled in, it’s puckered. And the interesting to note about this, it isn’t just on the surface, you can see it looks like it’s dug in underneath, it’s sort of under the surface. And that’s the thing about endometriosis, it’s an invasive disease, it starts on the surface and it burrows its way in. And that’s why when we treat it, modern treatment involves excising it and chopping all of it out, including the base of it, rather than just cauterising the top, which is traditional old-style treatment. This bulging structure you can see here is her rectum, and we’re just going to the right of the rectum, but we need to be wary, because we’re going to be needing to use heat to remove this. And we don’t want to cause an inadvertent burn to the rectum itself.
Voiceover:
He then carefully cuts away the diseased tissue and removes it from the area. It’s a technique that requires a great deal of skill, but is the best way of resolving the problem.
Mr Carpenter:
For many years endometriosis was simply being treated by people burning the top of the disease in the hope that they would get rid of it. However, by virtue of the fact that the disease invades within the tissues, burning the top is simply like just melting the tip of an iceberg. So nowadays, with advanced laparoscopic surgery and with a high-definition kit, we’re able to go as deep as we need to, and that way we ensure that all the disease’s out. Obviously having had the operation, Rebecca’s going to be rather sore this afternoon, however with radical analgesia, she should be fine to go home later today. Now it’ll take some time to see how well, uh, this operation’s worked, as obviously the areas that we’ve treated on the inside need time to heal out, and these will be more painful initially, rather than less. And she certainly should be back to full normal activity in a couple of weeks’ time. However at two weeks, it’s far too early to assess whether this has been of any benefit with regard to intercourse, we really need around six months for that.
Voiceover:
Six weeks after her op, and Rebecca is back to update Dr Pixie.
Rebecca:
I had it in three places: on my bowel, behind my womb and around one of my ovaries. Um, so he actually managed to cut all that away, while I was under anaesthetic, and managed to remove it all for me.
Dr Pixie:
So, one would hope that because he’s gone in, and done some surgery, that in time…I guess you’re, I guess the whole thing has to sort of settle down first.
Rebecca:
Yeah.
Dr Pixie:
But I think it’s worth giving it a bit of time to see, to see what happens.
Rebecca:
Yeah, I’ve been told, um, that three to six months is kind of a recovery time, when I should start to see a reduction in my symptoms, so I’m just waiting for things to settle down, really.
Dr Pixie:
Are you pleased now that you know what’s going on?
Rebecca:
Yeah, at least now I’ve got something that I can research.
Dr Pixie:
It’s really a case of watchful waiting now, and see what happens.
Rebecca:
Yeah, exactly.
Dr Pixie:
Super, well, thank you very much, and really nice to see you again.
Rebecca:
Thank you. Yeah, thank you.
Dr Pixie:
And yeah, keep us posted.
Voiceover:
Since seeing Dr Pixie, Rebecca has been able to enjoy an active sex life.
Rebecca comes to talk to Dr Pixie about the severe pain she gets whenever she tries to insert a tampon or have sex. Dr Pixie performs an examination to check the cervix and ovaries but finds everything to be in order so sends Rebecca to see a gynaecologist. Dr Tyrone Carpenter soon finds Endometriosis around Rebecca’s womb, ovaries and bowel. Subsequently Rebecca undergoes surgery to literally cut the Endometriosis out. 6 weeks later Rebecca returns to Dr Pixie and, although the healing process is a long one, notes a marked improvement in her sex life.
Patient Name: Rebecca Gibbs
Condition: Endometriosis
Specialist: Mr Tyrone Carpenter, Consultant Gynaecologist
Hospital: BMI The Harbour Hospital, Poole
Length of operation: Approx 20 minutes
Yes
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Hi everyone, My names rebecca I was on the programe last year for endometriosis. My biggest piece of advice to all of you would be to never give up. I suffered for 7 years, no one took me seriously, kept fobbing me off with creams and tablets to control the pain i had during sex. It shouldnt take coming on to a programe like this one to get help, but sadly these were the lengths i had to go through. The operation i had has helped with the deep pain i was experiencing but it has by no means gone and i am undergoing psychotherapy. I never really managed to convay on the programme how important it is to never give up. It should not be taking years for us to get diagnosed with this problem, so in my eyes the more we bug our GPs the more they will listen. Also do your research, read up about your symptoms, im not just talking about going on the internet, but talk to other people, read journals and look on reliable websites for information and support, so when you go to your GP you can back up your symptoms. Its a real shame but there is so little research out there i think we are going to need to educate the GPs as we go. My symptoms were by no means classic of endometriosis as i have never had painful periods but in my eyes painful intercourse is just as debilitating, especially psychologically and emotionally. Dont think you have to live with this condition, please never give up going back to your Dr to get it sorted!
Hi Rebecca, I'm glad the surgery helped you (at least to some extent) after so many years of suffering and I hope you continue to make progress with the help of psychotherapy. I went for a gynaecological control yesterday (I'm British but now live overseas - I paid for the check-up as no checks are covered where I live until you are 30!) - to be honest I expected everything to be declared normal and got a big shock when the gyn. advised immediate action for very enlarged ovaries with suspected endometriosis. I too have never had any symptoms/problems surrounding my periods (they are regular and normal) - I do however experience pain during sex and have occasionally woken up in the night with a terrible stabbing pain in my abdomen (it eases within an hour). It never occurred to me that something might actually be wrong and my experience with GPs hasn't been too helpful to be honest. Anyway, it's given me comfort to see your video and get an idea of what I might go through should I need treatment (for me the next step is hormone medications and a pelvic MRI) - I'm quite frightened about the whole thing - just hoping I can still have children at some point in the future. I think it was very courageous of you to go on camera and share your story. Thank you :)
I also suffer with extremely painful periods that are also honestly rather heavy. However I'm not entirely comfortable with going to my GP to be examined. I have been in and discussed my problem many times since I first started my periods and have tried all numbers of medications to attempt to remedy the problem. I also encounter pain when trying to use tampons, so much so that I can't physically use them, and during intercourse.
Hi, I`m 32 mother of one.I have contaceptic implant from 2009, but my perios are not regular, I`m bleeding about 7 days. And I notice if one day I have sex next day I will start bleeding like at normal period about 7 days. For example: I have sex on 18 of June, on 19 I start bleeding, ends on 26, but after sex on 1st and 2 nd of July I start bleeding again. And it is really unsettle our life.Can it be endometriosis?
I had the implant put in last year (I'm eighteen and had it to sort out my generally heavy period) after a couple of months I noticed a significant differenence in my periods. They became more regular as in I would have one every other week, and they became heavier than they had been before. I went back to my doctor and had the implant removed after just one year, they were hesitant because they insisted that the implants cost the government a lot of money. Since then my periods have gone back to the way they were before, on time however they remain heavy. I believe it's just the implant.
Hi I am 42 years old and for the last 4 years have suffered from permanent menstrual bleeding. I get my normal period which lasts 4 or 5 days then I spot and clot for about the next 18 or 19 days - it's likd old dark blood and it smells bitter. I have had 5 cervical smears in that time - the first 2 showed pre-cancerous cells but the last 3 have come back normal. I have been checked for chlamydia which came back negative. I was prescribed various contraceptive pills and then put on depo provera - none of this worked. I have had 3 womb/ovary scans (internal with camera) and all have come back normal. ~There are no signs of endometriosis. If I'm lucky I get about 3 days a month with no bleeding. After all these tests my consultant gynaecologist at my well woman clinic has said that apart from having a cap fitted (and she is doubtful that this would help) all that I can do to guarantee this stopping is to have a hysterectomy. I feel that this is too radical for me. Can anyone advise if they have also suffered from this for the same amount of time and whether their issue was resolved with something other than a hysterectomy and/or contraception (which as already stated, did not work for me). This is affecting my life physically and emotionally as I feel unable to be in a relationship because of it.
Hi I am 42 years old and for the last 4 years have suffered from permanent menstrual bleeding. I get my normal period which lasts 4 or 5 days then I spot and clot for about the next 18 or 19 days - it's likd old dark blood and it smells bitter. I have had 5 cervical smears in that time - the first 2 showed pre-cancerous cells but the last 3 have come back normal. I have been checked for chlamydia which came back negative. I was prescribed various contraceptive pills and then put on depo provera - none of this worked. I have had 3 womb/ovary scans (internal with camera) and all have come back normal. ~There are no signs of endometriosis. If I'm lucky I get about 3 days a month with no bleeding. After all these tests my consultant gynaecologist at my well woman clinic has said that apart from having a cap fitted (and she is doubtful that this would help) all that I can do to guarantee this stopping is to have a hysterectomy. I feel that this is too radical for me. Can anyone advise if they have also suffered from this for the same amount of time and whether their issue was resolved with something other than a hysterectomy and/or contraception (which as already stated, did not work for me). This is affecting my life physically and emotionally as I feel unable to be in a relationship because of it.
I was diagnosed when I was 24, 11 years ago. I was put on provera tablets, a high dose hormone for 3 months. I would be ok for six months then the pain would come back, and i went back on the provera. I suffered bad side effects on the pills. After years of suffering, i found a lady doctor who finally understood. I have been on a progestrone only pill called cerazette for 5 years now to stop me having any periods. I have had no pain, bleeding since. So glad I found a different doctor as the dosage of provera i was taking was very bad for me, esp my bones. Dont give up!
I was diagnosed with endo when i was 15, after about 2 years of pain in which every time I got my Period it was so heavy I could not go to school and had to crawl around on the floor, I would have the shakes and shivers and some times pass out with the pain, I was referred to a gyno who confirmed endo, I was told I had a stage four endo and also had ovarian cysts and a lot of scarring due to cysts bursting which was coursing me to pass out with the pain, it was then I was told I will not be able to have children and the only option was to have a hysterectomy, I said no and asked was there any other way, I was put on lots of different treatment to help with the pain, The first course of treatment was a danazol for 6 months and then i was put onto Noriday (mini pill) none of which helped, after about 5 laparoscopy to remove cysts, I fell pregnant much to the doctors surprise but they did say I would more than likely miscarry, which they were correct at 8 weeks, however they told me I would not be able to even fall pregnant, so I said well you were wrong about me not being able to get pregnant which made me more determined to prove them wrong, at that point they referred me to one of the top leading specialists in the country and he gave me laser treatment which burns the lining of your womb and helped with endo but does leave a lot of scar tissue, I had this done and was told to not try and get pregnant within the next twelve months as it takes a long time to heal, well I did get pregnant about 7 months later much to the surprise of the doctors again and went on to have a very healthy boy, although not all plane sailing as pregnancy was not great but I was very happy to be pregnant but it was very painful carrying due to the amount of scar tissue, so every moment I was crying in pain, but quit happy to put up with it as I was having a baby, because I had experienced so much pain when it came to labour well I was walking round the hospital (as that was were I spent most of my pregnancy due to the pain) I was in labour and did not even know as the pain was nothing to what I had already been getting, so on the plus side labour great and very straight forward out the next day, My doctors think it was due to having the laser treatment and falling pregnant very soon after is why I fell pregnancy, I did get pregnant again when my son was 10 months old and once again very painful pregnancy but easy labour, again doctors said because they were close together that is why i fell pregnant again, they do say once you have the first it help the endo and if you have the second very soon after it increases your changes as they longer you leave the change the endo will come back sometimes even worse, well I have two very healthy children one boy who now is 9 and a girl who is 7, I am now 36 year old so it been a long hard painful time but well worth all the pain and determination in the end to prove the doctors wrong, that is why I'm writing this not always but sometimes there is a light at the end of the tunnel and doctors are not always right if i had listened to the doctors i might of had a hysterectomy at the age of 15 with out even trying, Well I'm 36 my youngest is 7 and about two years ago my endo got bad again I have since had another two laparoscopy to remove cysts and sill very bad and painful but as I have two fantastic little miracles, I have learnt to live with it and is looking forward to menopause.
I am 21 and for about 10-11 years i have been suffering from chronic pain in my lower abdomin and having pain during and after sex. I kept seeing my gp and ending up getting admited to hospital but they kept saying they cant find anything. Eventually they finaly did a laparoscopy and found endometriosis and a ovarian cyst which i had removed. about 6 months later i fell pregnant with my little girl and after having her i was back in pain again. I then got reffered for another laparoscopy but it was all clear and now i am living with it every day which is a big struggle. if anyone can give me any advice on what i should do now it would be a big help.
I haven't been diagnosed with endometriosis yet, I have a scan in the next couple of weeks. It started a week ago officially, although I have been severly fatigued for months and experiencing some pain occasionally during sex for months. Last week, after sex, I experienced extreme pain in my lower abdomen, started shaking violently and felt sick. I went to hospitol, but they found nothing. It happened agin a few days later. I mentioned Endometriosis to my doctor and she did an scan and swabs and I am now waiting for the scan. I have also been trying to get pregnant for 18 months now, so I'm hoping it is Endo and I can get the laparoscopy and I'll be able to have sex and get pregnant again. At the moment though, it's just really upsetting not knowing for sure.
i seem to have lots of symptoms but im not sure if its endometriosis? i have back pain most of the time, i get really bad lower tummy pains in the middle of the month, my periods are very irregular, i have deep pain during sex and am always tired. It took me two years to fall pregnant with my second child, which i had a missed miscarraige at 12 weeks. im 24, could this be endometriosis?