Endometriosis?

[valleysangel92]

Hey all

So I had my first smear test today, and while I know they arent supposed to be a heap of fun, it didnt go as smoothly as advertised. When the nurse inserted the speculum, it felt as though it was a knife, the deeper she got, the more severe the pain became and when she was finding my cervix I started crying involuntarily (rather embarrassing, I've never done that before) .

The nurse was very understanding and sympathetic and asked me some things about general symptoms like period pain etc.

Based on what I said she told me it may be a good idea for me to go and see a female GP and have a chat with her as she thinks I may be suffering from endometriosis.

My symptoms are -

Pain during penetration - I've not had intercourse for a long time, but when I did it was very painful and I absolutely cannot tolerate tampons, they may as well be sand paper.

Very painful periods that last a full 7 days and can be really heavy. There have been times where I've resorted to standing against warm radiators because I couldn't get relief any other way.

Intermittent abdominal pain which often feels like menstrual pain although there is no blood.

I still get D even though my crohns is classed as being in remission.

I know there are a few here who have experienced this and wanted to see what your opinions are, also I wondered if you could enlighten me on what to expect if I decide to persue this.

 

[Astra]

Hiya Nicola

Yeah I had endos very bad and suffered from as young as 15. Long story but I had a laparoscopy to remove the endos and eventually had a total hysterectomy and ovaries removed too. But I was 37 and had had my 2 kids.
here's my wiki entry

http://www.crohnsforum.com/wiki/Endometriosis-can-mimic-Crohns

ask your GP for a referral to gynae, good luck xx

 

[valleysangel92]

Thanks Astra.

If you don't mind me asking, how long after your diagnosis did you have your children? I really want a family some day, but I know that the longer you have endo, the more chance there is that it'll effect fertility, so I'm just curious.

Did you have to have a pelvic exam before you got your referral? (No worries if its too personal)

 

[Kero]

I too have had endometriosis. It is definitely not fun. I am glad there is more awareness being brought up about it. All your symptoms match mine exactly! I have been reading that endo and Crohn's seem to seen together often, I think cause both are immune disorders. They will also mimic each other and present many of the same symptoms. I was diagnosed in January 2000. My daughter was born July 2005. Had a total hysterectomy, ovaries and cervix gone too, Jan 2011 at 32 years old

 

[valleysangel92]

Thanks Kero

Am I right in thinking that a hysterectomy is a last resort used in severe cases though? The information I've read says its rare to resort to that, but you never know how accurate the internet is so I take it with a pinch of salt anyway. I'm hoping to pluck the courage up to see the doctor tomorrow or thursday, whichever I can get an appointment for. Did you find any of the medications helpful at all? Even if not long term?

Thankyou both so much for responding, it's hard to know who to talk to about this kind of stuff, my partner is great but obviously as a guy there are things he will never be able to relate to.

 

[SarahBear]

Awww, Nicola. :hug:

My GYN suspects endometriosis as my symptoms fit. We aren't doing surgery to formally diagnose though, as birth control is controlling the symptoms fairly well for now.

My symptoms are very similar to yours. They are:
- Pain during intercourse that can be very severe and sudden and I sometimes end up unintentionally crying and/or screaming (not the pleasant kind) as well… makes things awkward.
- Painful periods that are exceptionally heavier, longer, and more painful if not on birth control - in fact, my iron tends to drop and make things even more fun. A couple of times I've had random extra periods thrown in, as well.
- Menstrual-like abdominal pain at random times (although this one is tricky, because my Crohn's causes pain in the same area and can feel very similar). A few times lately it's been a severe ache around my ovaries (sometimes one and sometimes both) to the point that I can't stand straight and get nauseous.
- Painful bowel movements, urination, and sitting/standing during and around my period.

A hysterectomy is a last resort, absolutely. Are you on birth control now? Hormones are generally used to control symptoms. Surgery to remove the endometrial tissue can be done as well. All of these things are done before a hysterectomy.

:hug:

 

[valleysangel92]

Thanks for sharing Sarah :hug:

Its so nice having this place

I'm with you about things being awkward, especially being young, I find that makes it seem even more awkward.
I actually have low iron pretty much all the time.. I don't think I've had it come back higher than borderline low since I was about 16..

I'm taking a mini-pill called cerazette, you take it all the time without breaks and for some people it totally stops periods. It did that for me for a while, then my schedule got messed up going in and out of hospital (the nurses kept locking it in the cabinet and then not giving it at the right time because the time wasnt on the drugs chart). For the last maybe 6 months, my periods are really erratic, coming whenever they feel like, and more painful than before (I was given cerazette because I'd been trying pain meds for 2 years and none were helping enough).

Im not allowed to take the full pill because of the greater risk of a blood clot, my mother had DVT from the pill when I was 9 months old so me and my sisters are always warned against it.

Im not very familiar with what other options are suitable for endo birth control wise, each site says different.

 

[SarahBear]

I made a sticky on endo that you can find here. It discusses treatment options a bit. I'm not sure what does and doesn't have a greater risk of blood clots, though. But, essentially, any form of hormonal birth control can help. The patches should definitely be avoided, as they have a higher dosage of estrogen and therefore would increase the risk even more. I'm not sure if progestins (the shot and the implant) carry the same risk, and google isn't being too clear. I'm sure a GP or GYN would know.

 

[valleysangel92]

Thankyou . I think that there is a small risk with progesterone treatments, but it's not as big as the estrogen ones, there is a little warning on my mini pill leaflet (which is progesterone only) but it says it's really rare and I'm monitored well. The injection is something I've had mentioned before by doctors so I'm pretty sure it's meant to be safe (or safer than estrogens anyway). I had the same issue with google, so glad it's not just me . Thankyou for your input you've been really helpful .

 

[Astra]

Hiya Nicola

Phew, it was donkey's years ago! I can't remember the exam.
I had my kids in 1991 and 1994, I hadn't had a diagnosis of endos then. I think it was about 1998 when I got the diagnosis and a lap done. I think I had a few years relief. I had my hysterectomy in 2001.
I bet there is so much more they can do now, hysterectomy is a last resort, but I begged and begged, it changed my life forever!
Talk to your gynae about options xxx

 

[valleysangel92]

Thanks Astra

I'll try and get in with my GP tomorrow if I can, I'll have to call at 8 am and see if they can fit me in with someone, since trying to book in advance is almost impossible unless you want to wait 3-4 weeks. I'll have a chat to them and see if they'll refer me, hopefully the gynae waiting list will be shorter than gastro and rheumy -_-.

 

[Kero]

Unfortunately, the treatment options have not changed at all. There is no funding or studies being done really. They can go in by laparoscopy and burn it off, then meds, either depo provera or continuous bc pills. Been the same treatment for at least 20 years. I have noticed that there is more awareness now. I remember getting diagnosed back in 2000 and I would tell people I had it, and they were "endo-what?", I would have to explain what it was every time. More people know what it is now and I think we can thank internet for it, lol. One of our local TV reporters is trying to raise awareness. It affects many more woman than they realized.

 

[valleysangel92]

I've found a few sites with a few treatment options other than bc pills and surgery.. For example I've seen information about injections and other hormone treatments that are not contraceptives, even medications that can bring on temporary menopause. I've only really been looking into it the past few days but I found the information on the nhs website... www.nhs.uk.. And the thread Sarah mentioned contains information on some other treatments too.. So maybe the treatment options in the UK with the nhs are different to where you are? Or maybe your doctors don't use some of the treatment methods?

 

[Kero]

Glad to hear they have a few more options. I did the temporary menopause before my hysterectomy. Not having a period at the time was such a relief. But it's not a gradual menopause, the side effects suck because they hit hard. Your body doesn't get a chance to get used to it like regular menopause. Hysterectomy is definitely a last ditch effort.

 

[valleysangel92]

I have an appointment with a GP at 10.30am UK time, I requested female, but it'll be hit and miss what doctor I get. Some of the doctors at my GPs are pretty hard to talk to and make you feel like its all in your head. I'll let you all know what happens

 

[Lisa]

Good luck with the appointment, hope you get some answers/help!

 

[valleysangel92]

Well, it wasn't what I expected ..

The doctor said she didn't think there was much wrong, she said if I can 'tolerate' a speculum then I can't be that 'small ' . She thinks that I need to relax more (in fairness I was nervous Monday, but no more than I would think was normal with that sort of thing) and has given me some sort of moisturizer to use that will apparently make penetration easier ( I told her I'm not having intercourse but she seemed to think it was just because of this) .

She did say that if I continue to get issues then maybe we could try a different mini-pill to see if that would make more of a difference. So I'll give it a little while and see if the one I'm on starts working well again, if not, back I go.. Thanks everyone for your input.

 

[SarahBear]

That doesn't make much sense. It doesn't sound as if she listened to you. Could you possibly see another doctor?

 

[valleysangel92]

To be honest I wasn't sure how much she did listen... some of what she said made sense, like she said she didn't want to send me for invasive tests if it could be managed without that.. And I get that... But she didn't seem to realise that it was about more than the pain from the smear and that I've had symptoms for years and just dealt with them the best I could at that time.



The difficulty with my doctors is that you can't guarantee what doctor you'll get, if you want to ask for a specific doctor you have to wait, sometimes more than a month. I guess sometimes because I'm young and have a long history the doctors that don't know me so well can think that I just want to be reassured..

It's pretty hard getting in with my GPs, so getting another doctor will probably take a little while, especially since some of them get shirty if your notes say you've already spoken to someone about the issue really recently.

There are a couple of really nice doctors there that I know I can trust to listen better, trouble is everyone always asks for them... So if/when I go back, I'll ask for one of those, even if it means waiting longer.

 

[SarahBear]

Yeah. I'd probably go ahead and try to schedule an appointment to get in with one of the better doctors, so you don't have to wait if another problem occurs and you try to schedule then.

To be honest, I think your concern with fertility needs to be addressed. If that worry is going to be hanging over you, you definitely need to get in with a doctor, figure out what is going on, and whether or not that is a possibility. :hug:

 

[valleysangel92]

Thanks Sarah,

Yeah I've got maybe 3 doctors I know I could talk with, so I'll try to get in with them.

If I can't then I think I'll see if I can take someone with me, to help fight my corner, although I can stand up to doctors when I need to, it's always easier when someone else is there. Usually it's hard to because both my parents work, and my partner lives 50 miles away. But mum will be off for 2 weeks at Easter, so maybe I'll ask her to come along. It's amazing how much more seriously you get taken with a parent looking over your shoulder.

 

[valleysangel92]

Thought I should update this

So I went to one of the good doctors, got in under an emergency clinic and she somehow got me in with her even though it seemed to be a different doctor in charge of the emergency patients.

She listened and had a look at my stomach, and decided to do a urine check because I'm very probe to water infections and a previous test 3-4 week's before that (before the smear) had shown 'borderline ' .

The dip test showed that I had a pretty nasty water infection which had been festering all that time. She said there was a possibility that the pain from the smear was partly related .

I had a 3 day course of strong antibiotics and have felt much better since, the D has settled a lot . I still have stomach pain though, and will be keeping an eye on that, I'm currently keeping a diary of the symptoms, to help find any sort of pattern that might be there.

We are still not sure what symptoms are and aren't crohns yet, I've started to loose some weight again (almost half a stone) and I'm tired and achey ( I'm vit D deficient and probably anemic as well) and getting a lot of bloating and heartburn. I'm not seeing my GI until around July, so I'll be reliant on the GPs until then.

If the urine sample hadn't shown an infection, I think I would of been sent off to the hospital.

 

[mama21princess]

I'm glad your infection got diagnosed properly! I hope that will help.:hug: