Fertility Network UK
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Worst I've ever felt!

Hi lovely ladies..

I hope your all doing really well on your journeys . And wish you all luck in the world!

I have been struggling lately, as you may know I have had cervix stretched and now am waiting to start FET after my trial transfer.

First of all after having service stretched I attended follow up with my consultant and told him I have had increased pain since in my left hand side of stomach, he said don't worry all is normal and sent me away although tbh I wasn't convinced! The pain then worsened so I book in with gp who says just endermetreosis I still am not convinced! That afternoon pain gets really really bad so I attend a&he who discharge me with codiene no one as even examined me! Yesterday the pain was the worse I've ever felt just curled up on bed all day and just had argument with mum because she's saying I shouldn't go ahead with Ivf just at a loss at moment sorry for rant! Thanks for reading and lots of baby dust to you all xxxxxx

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So sorry to hear you're feeling so awful and have been treated so shabbily Liz, I really hope it eases asap and you can go ahead with your cycle. Big hugs xx

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Can you make an appointment to see a different gp? No one seems to be taking your concerns seriously. My Mum didn't really want me to go ahead with ivf for health reasons (she'd heard about the possible side effects) and it led to some heated discussions and me crying. She now undestands it's something I had to do and is behind me 100%. Good luck and I hope you feel better soon xx

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You should attend a doctor. Even if this doctor will be from another clinic.

Your health is priceless and you must double concern about it because FET and further carrying a baby.

In case of mom - everything`ll surely changes as soon as she know\see her grandchild\children.

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Hi liz1985. So sorry you're having a tough time. I must be honest, I'm not too happy to hear that no one has given you an explanation for the increasing pain you are suffering. Pain is NOT normal, and is a symptom of something. perhaps you need to go back to your GP or A & E if it is still there to get a definite reason for it, maybe even a scan?? Hope all soon settles down and you don't need any follow up. Thinking of you. Diane

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Not to want to scare you-i had chronic pain in my lower left abdominal side for 6 months ( and to be honest for years have suffered abnormalities in my cycles as well as secondary unexplained infertility for nearly 6 years) caused by undiagnosed endometriosis in the pouch of Douglas- which my Fertility consultant found and treated. It was the worst pain I have ever experienced and I have utter sympathy for you- mine was so bad that just daily activities was a huge struggle. Endometriosis is a common gynae condition.

Unfortunately there are no cures for this chronic condition but it can be treated to ease the symptoms. I can't believe your GP attitude " only endometriosis" does your GP actually know anything about endometriosis?! Because I have never heard any medic refer to endometriosis that way. It is renowned for being painful and for affecting a person's quality of life. As well as the emotional impact it has- my GP disbelieved me over the level of pain I was in calling it " a bit of tummy pain" basically telling me to piss off! He looks stupid now haha!

Endometriosis can affect fertility and cause severe pain. It is cells that implant like in your uterus but other places unlike the uterus it can not break down each month so cell/ implant has no where to go making them inflammed and causing you severe pain. I would come home from work in tears from the pain.

It makes me so angry women are made to suffer like this. Unfortunately the medical profession know very little about this condition and it takes women many years to be diagnosed.

Your gynae should be now ordering you a laparoscopy- that's what my consultant did after scan revealed nothing.

My best advice I can give you (I'm sure you don't want to hear this) is don't have this IVF cycle until the endometriosis has been treated- it can hinder implantation. This needs to be addressed before any further treatment. Not just for your fertility but for your health.

This could be the reason the first cycle didn't work. I don't know why it isn't a standard test to rule/ treat endometriosis in infertile women. Its so common 1 in 10 women have it.

Endometriosis can only be diagnosed via laparoscopy.

As for me no prescription painkillers did a thing for the pain- I tried every pain killer.

I cut dairy out as I noticed I endured more pain-my fertility consultant said there is a link between lactose intolerance and endometriosis and he's advised me to go gluten free too to help it.

I hope the medical profession support you and treat this and you feel better. I'm so angry on your behalf-been were you are. xoxo

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I'm sorry your in pain. I know exactly how you feel. I too have suffered with severe pain in my left side for about a yr. An ultrasound was done which found nothing, several blood tests which have also come back clear yet I'm still in agony. Dr reckons its stress from not falling pregnant or something relating to my bowels. I'm at the point where I don't care I just want to know what it is and how to make it go away. I don't have a gynaecologist because they don't want to refer me as they say I'm too young and not been trying long enough.

I hope that they sort out what's going on with you soon as the stress probably won't be very helpful in the long run.

Thinking of you and good luck 😉

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Oregan I would definitely see another doctor- hell see as many as you have to until somebody listens to you and takes it seriously. I highly doubt that it's the stress of trying- I've been trying nearly 6 years and never had that and believe me I have been very stressed over the years. I would urge to be referred to a gynae to look at your symptoms and run further tests. I had unexplained infertility for nearly 6 years, many issues with my cycles and finally chronic pain in my lower left abdominal side- all these were caused by undiagnosed endometriosis in the pouch of Douglas- I would get gynae and bowel issues making mine very difficult to diagnose. My GP fobbed me off with a "bit of tummy pain". Luckily I have a great fertility consultant who took my pain very seriously and arranged an urgent scan- all clear and then suggested a laparoscopy- where he found and treated endometriosis. This caused me secondary infertility and severe pain. You need to see a gynae- endometriosis isn't understood by GPs-its a common gynaes condition affecting 1 in 10 womenIt can only be diagnosed via laparoscopy hopefully you don't have this condition. It should be ruled out.

The pain you're in isn't normal and your GP shouldn't be fobbing you off. Write a diary of pain attacks, list the foods you've eaten, the type of pain, how long it lasted and present this information to your GP- might help them to see a pattern. I did this- from this I realized I was having pain after dairy products- I cut dairy out and it reduced the number of pain attacks.( But I was still getting pain- so consultant suggested a laparoscopy.)

Also I would suggest to bring someone into the GPS appointment- far less likely to be fobbed off

. I have been where you are- we had an awful consultant who was disinterested to say it politely, several gynae issues = referral to gynae which recommend I was referred to a fertility consultant ( one of his colleagues) = jackpot we got the head consultant who gave me clomid as he thought I had polycystic ovaries- 4 the round it went badly wrong and this is when I got the severe pain.

A lot of back and forth to a dismissive GP who didn't believe me but I saw many other healthcare assistants, nurse practitioner and doctors and my consultant who did believe me and did their best- only one bad apple! I guess what I'm saying here is just because one GP didn't take you seriously doesn't mean the rest wouldn't- please don't give up and feel you have to accept this pain. Its needs to be addressed- whether they decide bowel investigations then gynae referral. Sorry you're having to deal with on top of trying for a baby which is hard enough. Sadly we sometimes have to fight to be heard. xoxo

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I'm sorry your in pain. I know exactly how you feel. I too have suffered with severe pain in my left side for about a yr. An ultrasound was done which found nothing, several blood tests which have also come back clear yet I'm still in agony. Dr reckons its stress from not falling pregnant or something relating to my bowels. I'm at the point where I don't care I just want to know what it is and how to make it go away. I don't have a gynaecologist because they don't want to refer me as they say I'm too young and not been trying long enough.

I hope that they sort out what's going on with you soon as the stress probably won't be very helpful in the long run.

Thinking of you and good luck 😉

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If I hadn't had the laparoscopy I wouldn't have had known I have endometriosis and because it's been treated the pain has gone and my Fertility is restored.

Scans won't diagnosis endometriosis- only laparoscopy will. Scans cannot show everything.

Its not right that you've been left to suffer this pain which medics cannot give you a proper explanation for. This level of pain should not be ignored. Pain like this is not normal and is indicative that something is not ok. The GP should investigating the cause of pain or least referring you to a specialist that can help get to the bottom of it.

Please don't let the medics make you feel a nuisance- you deserve answers for this pain and for it to be treated. Its not fair that they are making you suffer.

I hope one of the doctors at your practice can get to the bottom of it. I know how much pain can get you down xoxo

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Hi thanks for the reply 🙂 I have literally just seen it

Thankfully I have now had a referral to gastroenterology and they are going to do some investigations..the consultant he is also thankfully going to prescribe me some medication so at least I won't be in agony until the appointment comes through.

They originally thought it was endo however I'm not meeting all the symptoms only one or two. They seem to (at the moment) think it may be more likely to be IBS or IBD however I've had (for me) severe weight loss, which isn't normal and the consultant has said doesn't fit the profiling for those.

If I look at it I feel like some of it may actually be stress but not the pain I have never known pain like it it's awful but thankfully I'm on the way to hopefully a diagnosis of something. I will keep pushing.

I do think it may be effecting my chances of conceiving making my body think it's too hostile to carry a baby which as U said is difficult enough without the worry of all this on top.

Hopefully I will find a solution eventually.

Thank you so much Jess for sharing ur story with me it has really helped and I will keep pushing as it effects my daily life and sanity 🙂

Xx

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I'm so pleased you've been referred and I really hope that they get to the bottom of your pain-its miserable being in pain.

You can endometriosis without having all or Indeed any symptoms at all. What they're saying isnt true.

I had symptoms which got ignored for years. I had pre period spotting for 4 days before my periods-red/pink/brown discharge (first fertility consultant ignored this) I have always suffered painful periods but on two occasions they were that bad I ended up in hospital ( once when we had been TTC 18 months- ignored by first fertility consultant, second last May- doctor thought I may have burst my appendix-hadn't) periods became so heavy 3years ago that I couldn't leave the house and became anaemic-treated with ferrous sulphate by my GP, 2 and half years ago I started cramping severely and bleeding between my cycles- investigations were done by GP scan indicated fibroid/polyp so a referral to a general gynae and I had a hysteroscopy which was all clear, issues still continued so GP tried to treat the symptoms and he tried several medications and nothing worked so referred me to ànother general gynae and he was great poo pooed the notion of it being unexplained infertility and insisted I needed a Fertility consultant not him-i told him how stressful I found our ex clinic and consultant and he wouldn't help us- so the general gynae took me seriously and put in a letter to my GP that he recommended I was referred to a ( named the clinic- to his colleagues clinic) amazingly my GP agreed and we were referred and the head of the clinic insisisted we saw him and we were assigned the top man- he intially believed my cycle issues were caused by polycystic ovaries and prescribed me 6 months of clomid- sadly this did not work and I started experinced chronic pain in my lower left abdominal side- my consultant after I ended up in hospital with pain sent me for an urgent scan- all clear, we had our follow up appointment with him and he suggested a laparoscopy to check tubes and check/treat endometriosis- laparoscopy was done and he found and treated endometriosis from my pouch of Douglas ( which is in between my uterus and rectum giving me bowel and gynae issues) After 5 years and 10 months after TTC we finally had an explanation for our infertility

. It is upsetting it that it took so long and the whole time we've been trying we didn't stand a chance- as the endometriosis would hinder implantation. It would break my heart if anyone else had to suffer as long as we have. I'd hate to see you go through this- it's been such a tough long battle.

Hopefully yours isn't endometriosis- it's not a nice condition to have ( it can't be cured only treated) It makes me so angry ruling out endometriosis isn't a standard fertility test. And it has to get so bad before medics consider it to be that- my consultant believed my symptoms were bowel of origin and he was shocked to discover it wasn't. But was beaming to tell me good news- normal ovaries not polycystic, clear tubes, and endometriosis found and treated- believing pain and fertility issues caused by endometriosis.

Please do let me know how it goes. I am thinking and praying that they sort this out soon. xoxo

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Hi Jess

Apologies in advance for the potential TMI.. 🙂

In some ways I've been quite lucky I don't get any bleeding in between periods although recently my periods have only been about 2 days. I haven't had to go to hospital and can sometimes go a few days with no pain. The pain eases when passing stools although has on occasion been a build up of gas that feels like stools. The last few months there had been pain after me and the OH get busy and that then puts a downer on everything afterwards because I then become anxious of doing anything incase of the pain. Feel sorry for the hubby most of the time as it's not his fault. Dr is sending me to gastro as he says all my blood tests don't show any signs of inflammation as none of them are raised.

I am not sure what's going on all I know is I can have a few good days then have a few weeks of bad. No amount of paracetamol helps as it will dull the pain but not make it go away. And I don't want to take ibruprofen as that's not meant to be gd for ttc.

I always had painful periods and because I was young (16/17) was put straight on to the pill. Which I was on for 12 yrs. Having now come off a year ago to try for a baby after my hubby and I got married the painful periods are back. Although they aren't very long and will start heavy then go light very quickly the pain will last a week causing the feeling of needing to go the bathroom to be even worse. The pain will last throughout the month but it is worse when menstruating.

The ultrasound I was sent for was also clear although the sonographer did say that doesn't rule out endo.

My dr has told me that because I'm only 29 and have only been trying for a yr I don't actually qualify for a referral to the fertility clinic, he has said he will follow the protocol, do the tests for my husband and myself and still send it in although says I should basically be ready for a refusal. The only thing the gastro consultant said to me on Friday was that all the symptoms I described sounded like IBS or IBD but I have one unexplained symptom which is weight loss. As that doesn't link to either condition. I have gone from a 10/12 to an 8 being loose and I am not dieting or trying to lose weight intentionally.

Thank you for sharing your experiences with me and from reading your previous comments I see a lot of similarities between some of the things U have suffered with to what I am suffering with now.

I too hope things go well for you and would love to know how u get on in the future and will definitely let you know how things go. I have swabs being taken Monday morning to go towards the fertility referral and then just waiting on OH referral for sperm analysis.

Doctor seems to think once I'm pregnant pain will go away not sure if I agree as don't think I'll fall whilst in so much pain but anyway let's see what happens.

Take care

Kelly xx

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Interesting you should mention weight loss because I had that too- I lost over a stone in a week-I also wasn't trying to lose weight-normally I find it hard losing weight. Weight loss like that should always be taken seriously.

The other doctors also toyed with the idea of me having IBS and gave me IBS medication- it did nothing for the pain but did alleviate the bowel problems I was having- always worse during my period. During the chronic pain my period full flow lasted 2 days and less.

My consultant was convinced it was bowels not gynae. When the scan proved clear all the doctors were convinced it was bowels.

I must be lucky because my consultant despite his opinion wanted to rule out endometriosis as that can cause great pain and won't show up on a scan only diagnosed by laparoscopy.

The problem with endometriosis is wherever it is it does present bowel symptoms as well as gynae issues such as painful periods-which can confuse and delay getting a diagnosis.

Endometriosis seems to be a difficult condition to get diagnosed- little is known about it and every woman will have a unique cycle- it's hard to say what's normal and what's not. Its not normal to have such painful periods-which prevent you from being able to do daily activities and pain killers do not relieve pain.

The doctors in my practice wouldn't run further tests until I had my laparoscopy- which I understood as it happens it did stop the pain and restore my fertility.

I doubt with the pain trying for a baby is on the agenda- I couldn't even think about sex when I was having the pain. It seems your GP has underestimated the level of pain you're having? Its not that easy for some of us to conceive 😬

I tried every pain killer - prescription painkillers did nothing- I had the strongest ones too.

I think my endometriosis got worse and worse over the years- it went on and no body considered endometriosis- in some ways I wished I'd fought harder but I felt so beaten by infertility. If I'd known what I know now I would've done.

Could you see a Fertility consultant privately for an initial consultation- take your symptoms and ask him/her for their honest opinion. Endometriosis is a common gynae condition- a gynae should be able to spot the symptoms and if they did you could benefit from having a laparoscopy and referral - you could get them to put it in writing to your GP. Most gynaes work private and NHS and if the gynae thought you could benefit from a laparoscopy you could have this done on the NHS-i have seen ladies mix and match private and NHS. Maybe chose the gynae at the fertility clinic you will be referred to by your GP- I do you could see him/her privately and NHS. With private don't to be referred by GP- you can self refer. You can tell your GP you felt it was important to get a gynaes opinion on this- justifiable when you want a baby. I think it costs around £200 but it might be really worth it. If the gynae specialist doesn't think it might be endometriosis then you'll feel reassured by that more than by a GP- they're great for everyday illnesses but they are generalists. I had tests done privately ( some were available on NHS some weren't) just to speed things up! And my consultant was fine with me doing that.

Definitely do these other tests your GP has organised in case something flags up.

I think sometimes we have to go through the notions to get our answers- each test is useful even just to rule it out.

I really hope that you get answers soon and it solves your pain and it restores your fertility.

I will let you know if my cycle is different this month after my lap.

I'm glad that this may have helped you,- if I can prevent someone going through what I've been through that makes me feel happy.

Keep me posted.

Wishing you the best Kelly xoxo

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Thsnks evryoen for your replies these journeys are terrible for us at times! Just thought I would wish you all luck and give quick update.. I started cycle today! Called them to say I need to have trial transfer and was told to call on first day she said first she can't find me in system and then found me and said I need to call results line between 2-3.30 pm as I haven't had any tests done i am very confused as to why? I'm not waiting on results??? Anyway suppose just wait to see what they say when I call just praying it's not another delay couldn't handle that right now!!!

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