Confused and frustrated

[Kirst625]

Hi,

I wonder if anyone can help. I've been on a quest on and off for many years to find out what's wrong health wise as different things have presented themselves. And have often felt like the biggest hypochondriac around, especially having not been taken very seriously along the way. Migraines started at age 6, over active, irritable bladder at 13, curvature of spine confirmed at 17, IBS like symptoms started at 18 along with painful joints and fatigue, depression and some anxiety. Bladder worsened age 24, rigid cystoscopy noted 'possible interstitial cystitis', had cryotherapy for ectropion at a similar time. Suffered still for a few years but then some improvements in everything aged 26-30, apart from cell removal due to abnormal smear. Migraine frequency worsened considerably for a while at 31. At 32 all symptoms seemed to come back with all at once, very unhappy bowel, back, hip and general joint pain, bladder issues and migraines and really bad PMT. After several trips back and forth to the doctors and specialists I stopped trying again to get to the bottom of it after running aground with a rheumatologist who diagnosed fibromyalgia conflicting with a specialist physio who diagnosed joint hypermobility and possible syndrome. I'm now 35 and in the last 9 months my periods have worsened quite significantly. I get approx 2 weeks of pregnancy menstrual symptoms and I get two days of black blood when I start my period. The period itself is often mostly lots of clots. My bowel has been very unhappy again too and I've noted blood or mucus from my bum but not very often. In the last few months I've had to take time off from work for the first time for both ovulation and my period. Pain intensifies, horrible headaches and feeling like I've been hit by a bus tired. I now have a general pain in my pelvis almost continually that is hard to fathom as it feels a mix of period cramps and pain in my bowel and bladder. This sometimes intensifies before going to the toilet. My new doctor is on board with the fact it could be endometriosis which I was pleased about after reading much on it and feeling I ticked quite a few of the boxes. She has been methodical and has checked out inflammatory bowel disease and I've had a scan (clear) to check for anything obvious first.

First appointment with gynae consultant was yesterday who wanted to focus on it being an IBS issue after his examination as there was no pain internally (though sometimes there is) and he felt the hot spots of pain he identified were due to my large intestine. He said it was highly unlikely it was endometriosis because I wasn't affected in the most common site, not extensive period pain (although I told him it's definitely getting worse!) no pain in cervix, and it moved freely on examination ,and no mid-month bleeding. He seemed to dismiss the black blood and clots as fairly normal. He said my bladder pain and occasional bleeding from my bum can both be IBS linked. He thinks getting my bowel under control is the answer and has prescribed meds I've had before and that haven't done the trick.

So I guess my question is, firstly has anyone else suffered any of the other seemingly unlinked symptoms I suffered with prior to this latest exploration? And secondly, has anyone else not had extensive period pain, no mid-month bleeding and no significant pain in cervix and then been diagnosed through laparoscopy?

Thanks for reading and any thoughts gratefully received.

Kind regards,

Kirsty

[LouLouT]

Sorry you've been through so much and don't seem to be able to get any straight answers. Everything you've described is pretty much everything I've gone through. Migraines started when I was 11 (shortly after my first period). Joint hyper mobility that could be fibromyalgia - no firm diagnosis yet. I was diagnosed with IBS 4 years ago which could be endo.

I have severe pain across my lower abdomen and lower back, hips, lower ribs, inside both legs. The pain varies from severe shooting/ stabbing pains to throbbing, gnawing, aching pains. The pain is worse the week before my period, during and a week after. I also get constant UTI symptoms but there is no infection and severe pain and bleeding from my bum but only when on my period.

I saw a gyne recently who has scheduled a diagnostic laparoscopy and cystoscopy next year. I've not been told that my other symptoms are linked though.

The gyne I saw was very sympathetic and it felt like he really understood (as much as a man can) what I was going through. After apologising profusely for crying and saying im not good with pain the gyne said to me something along the lines of

"Who is good with pain? Don't apologise for being in pain. What you are feeling is real do not accept this is ok, it is not ok. Dont ever let anyone make you feel like your pain isn't bad enough, only you know how you feel. And how you're feeling right now is not acceptable, you deserve better."

His words made such a difference to me and I hope they give you the strength to keep fighting.

Once I've had my op can let you know the outcome - maybe there is a link? From what I've read so far there's still a lot they don't know about endometriosis. Each persons experience is different I don't think there is ever a box we will all fit in to.

Could you see a different gyne and get a second opinion? I went private and would definitely recommend.

Hope you get some answers soon!

[Kirst625 in reply to LouLouT]

Hi, I'm confused lol. I wrote a reply but can't see it, did you get it?!

[LouLouT in reply to Kirst625]

I haven't seen a reply, no.

[Kirst625 in reply to LouLouT]

Hi, so sorry about that after you took the kind trouble of replying. I'll try and remember what I included! Thanks for reading through my ramble and for responding thoughtfully. It sounds like you have been through slot and continue to. Thanks for sharing what your gyne said, it must have been really reassuring to hear that and gives me hope there will be medical professionals out there who will understand. I think I'll do what he suggests for now and try to focus on the bowel, though I'm not convinced that tackling it as IBS is the way forward at least I can say I've tried. If I don't find him more helpful at my next appointment and my ovulation and period symptoms worsen I might ask to be referred elsewhere. We have a specialist centre not too far from us so might ask the GP about that.

Please do keep me posted about your op and I really hope it all goes well and you get some relief.

Best wishes, Kirsty X

[LouLouT in reply to Kirst625]

It's ok, these things happen. It's just nice to talk to someone who's been through and is still going through something similar.

I think finding medical professionals who seem to care makes a big difference. I also changed my GP and was referred straight away after years of going back and forth to a GP I'd had since I was a child.

I Think you've got to trust your own feelings, no one but you knows how you feel. It's easier for a doctor to say it's IBS and not investigate further, it's what happened to me and from what I've read a lot of other women.

It sounds like the best plan of action. I'm looking at a specialist centre near me too, trying to weigh up all the options.

I will do, thank you. I hope you get some answers too. Stay strong.

Best wishes

Lou x

[Bambaloo]

Start the endometriosis diet straight away, it’s hard but has helped me and many of the other girls. I’d be tempted to plead for a lap to rule it out completely and if they won’t go privately. Part of the pain is not knowing what it is, once you can label the bastarding thing you can start healing mentally.

Good luck love x

Ps. We’re you on the pill in you’re late 20s?

[Sula01 in reply to Bambaloo]

What is the endometriosis diet

[Kirst625 in reply to Bambaloo]

Hi, thanks for bearing with the ramble and replying lol. I've been reading about the diet on here, some people swear by it don't they and others seem not so sure. I think a plan could be getting Christmas out the way and then giving it a go.

You're absolutely right about pain, having had migraines for 30 years I think people don't quite believe me I suffer because I generally manage to carry on and they don't often stop me completely. I think with this, part of it is pain management isn't it but I haven't worked out how to deal with the hit by a bus shattered feeling other than bed and napping!

I did wonder about the pill and timings, I'd have to check but I'm pretty sure the 26-30 period was me mostly off the pill, having been on it since 17. I tried the mini pill for 6 months at 31 but really didn't suit me and haven't been on anything since. Not very clear cut, doh!

Cheers for your kind thoughts, hope all goes ok your end too X

[JOSANDY40]

Yes have all the symptoms u have for years, I have all diagnosed, ALL! Yes Endo effects everything if your immune is poor.

[Kirst625 in reply to JOSANDY40]

It sounds like you've really been through it 😖 what made them investigate endometriosis if you don't mind me asking? Did it take much to convince them?

[Kittykat8989]

Hey just wanted to say I never had any of the typical endo symptoms like heavy, painful, prolonged periods. Mine always quite short and light. Never interfered with my life as such. ALL my symptoms seemed bowel related which is why I was diagnosed with IBS. I had a miscarriage in January and it seemed to trigger something in my body. Left sided pelvic pain, chronic constipation and awful back pain. Had a laparoscopy and was diagnosed with 3 rectal nodules and an obliterated pouch of Douglas x

[Kirst625]

You poor thing 😥 hope you're ok as you can be in the circumstances X it feels a long time since writing that post. Things have worsened but am at least on more of an Endo pathway now, having seen a second Gynae who took me on board a lot more and thinks Endo could be a possibility too. I'm on second out of three prostap injections (feeling bloody awful!) and then they will review me to decide what to do next, I'm definitely going to push now for a laparoscopy. Can I ask if you were seen to by a general gynae or Endo specialist? I definitely want everywhere looking at properly bowel wise and also want to request they look at my bladder again, as it's 10 years since I went under for rigid cystoscopy and 'possible interstitial cystitis' was noted, bladder symptoms are as bad, if not worse than then. I hope you are now being treated effectively and have good medical support in place. Thanks so much for sharing your thoughts X