SPD and emdrometriosis

Hi,

Sorry I'm new to this type of thing but was hoping someone could help.

First a little info about me. At 13 I had abdominal pain, horrific period and I was very tired all the time. At this point a doc said maybe emdrometriosis as a scan showed unusual fluid in my pouch of Douglas (I think that is what it's called). I was put on the pill and things settled. At 19 I fell pregnant on the pill (a virus upset my pill), I had my daughter and afterwards the pain started coming back and i tried lots of pills but nothing worked. I then went onto having a few more pregnancies but unfortunately I misscarried. I eventually fell pregnant again (4 years later) and from day one I had SPD so bad I was using crutches at 20weeks and induced a couple of days early, so I didn't go over. It was horrific. Now my son is two and I still get Physio twice a week (private because nhs would not do anything for me) for SPD. 3 weeks ago I was in a lot of pain and was admitted to hospital for a week and tests were done but nothing found. I was sent home with pain killers and to hope that it would go away. My gp wasnt pleased so is now trying to help me fast as I was badly dyhdrated, losing weight and becoming depressed.

Antibiotics for bad intestine infections has help a lot but pain is still there. I have the marina coil so do not get periods. Thankfully. But every doctor has said it sound like emdrometriosis. Seeing the gyne on Friday at a not very great hospital and trying to find out info before I go.

Has pelvis problems ever been connected to emdrometriosis??

Intestine inflammation/infections?

I have been told by a local emdrometriosis group about the doctor I will see and that he will force you to take the hormon injections which has caused problems for most people.

HELP please

Sorry this is so long😳

15 Replies

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  • I maybe should have explained that when I say SPD I mean lower back pain, and around the pubis bone. It was diagnosed as spd without any investigation and only on the fact it started around the same week I would have became pregnant.

  • Hi - the physical symptoms of endometriosis are almost all pelvis related. And also gastrointestinal symptoms and bloating. Please click on my username and read my post on endo and its many symptoms.

    But also be aware that you can see any specialist you like. You don't have to see one that you are not happy with and cannot be forced to take the injections. Have a look at my post on finding an endo specialist. With the severity of your symptoms I think it is vital that you are seen in a dedicated endometriosis centre because of probable extensive endo. As your GP is clearly cooperative I suggest you print off the list of specialist centres and request a referral to one.

    Can you private message me the name of the consultant you are seeing on Friday and the hospital so we can check if they have any specialist interest in endo. x

  • Thank you, I will take a look at your posts.

  • I have a 9 month old baby boy and also had spd from very early in my pregnancy. My endo is also in my pouch of Douglas but it's never occurred that the two could be connected.

  • I'm only jumping to conclusion so please don't take that as fact. I just feel that there is maybe a connection and as no one has actually X-ray or Mri my pelvis, I don't see how they could be sure it is SPD especially when I still have it 2 years after birth with little improvement.

  • Endometriosis and SPD/PGP are not in any way linked, you are just very unlucky to have both as they affect the same area.

    The most effective way to resolve SPD is to give birth, however, if the hormones have caused your pelvis to misalign it doesn't matter what hormones you take you have to put it back. I see a chiropractor, he resets my hips and spine each time they go off/out of alignment. I had got my spine back but am pregnant again which is why I have this done more often. Physios have a talent for over correcting things but s chiropractor will just push it back into place.

    Endometriosis is totally seperate and you will need a lap to diagnose it. The best treatment would be to remove it. Stay on the coil. No periods sounds pretty good. And I would go on a multivitamin and probiotics to strengthen your body against these repeated infections xxxx

  • Thank you so much for your reassurance.

    I'm glad it cannot be connected. At lease I know the £100s I have spent haven't been a waste.

    I totally know what you mean about chiro. The Physio I attend is one of the best sport chiro and phsios in Scotland who are great at putting everything back in place weekly. they do not believe it's spd. They treat a lot of foootballers around scotland with types of spd/pgp. They would like me to get an mri but I cannot afford to do it private right now. Maybe in 4 or 5 months and hospital said no to doing it on nhs.

    I have alway taken vits and probiotics so I am not sure I can do anymore for that. Also my tests showed no infection in my samples so doctor isn't sure the infection was inside my bowel area. And suggested it is on the outside. (No idea if that makes any sense or not)

    Hopefully I get answers soon.

  • Is your pelvic pain any better since the mirena went in? I had one for a while and it made things worse rather than better, even though it was supposed to help.

    I was dx with Endo in 2004, age 22, after 10 years of pain and bowel symptoms. Adhesions were messing up my bowels and causing me major problems. Pouch of Douglas is a very problematic area for me, and Endo there causes me things like shooting rectal pain.

    The first lap I had was "clear" which delayed my diagnosis for another 18 months. I only found out later that I was only in there for 10 minutes and they didn't make enough incisions to properly look around.

    Advice from others who have seen the same doctor can be really helpful, but don't think the worst until you've seen him and don't let people put you off treatments. Everyone reacts differently - when I had the mirena, I had contractions for hours every day and was in agony. I spent two years on zoladex, which is probably what they're talking about, because it helped me so much. I would recommend it to anyone to at least try it. However, I do believe that the temporary menopause drugs should not be given until they have diagnosed what's going on. Push for a diagnostic lap, and if you're having issues with the mirena ask for it to be removed at the same time, or replace it if it's due to run out.

    I hope you can get some answers soon x

  • Hi cupcakegirl,

    May I ask, when you had your clear lap how did you get diagnosed after this?

    Same thing happened with me, and now because they couldn't find it their disregarding another diagnostic lap every time I mention it. But my gp definitely thinks its endo, and it has been missed. Because like you I wasn't in there very long. And a 'mr nobody' done my lap (my specialist didn't do it, was very angry about this!) He's now referred me to an endo specialist , and my appointment is in a fortnight. I am going to push for another lap, because the endo specialist will obviously know what hes looking for! So fingers crossed there xxx

  • I had the first emergency lap during my last few weeks at university, I was admitted for severe pain. It was done late at night on a Friday and it was rushed - they didn't even move any organs out of the way to look because there was only one main incision. I then moved home to a different area and everyone I saw said I didn't need another lap because id already had one. I kept being admitted for severe pain, and after about four or five stays in hospital I saw a gynae who said he thought it was endo and wanted to do another emergency lap. Fortunately they found it that time.

    I'm sure the specialist will have seen other people where it has been missed so I am sure they will agree to it.

  • Oh how horrible for you! :( sounds awful! I really hope he does want to do another lap! Cos im positive it is endo too! Thanks for the info x

  • No, the only thing that helps my pelvis is getting it out back into the correct place and each week require less moving but the person I see does not believe at all that it is spd as everything in that area clamps into a position and is very hard to move back. So no sign of anything been soft and easy to move. But he would need a mri to know what it can be and I unfortubatly cannot afford the at the moment. Nhs would only send me for post natal physio sessions. Which are useless!

    I have found the marina coil great. It was awful for the first 6 month and took about 8 months until I seen the full advantage but in my opinion it was worth all the cramping and bleeding. Now I get very little signs of periods/hormones.

    But everyone is different. I was scheduled to get it out as I got fed up waiting on it to settle and then it just seemed fine.

    I have had it 2 years so still got 3 years left.

    Thank you so much for all you help.

  • Hi, I've never been pregnant, but spent many years with a misaligned pelvis following a fall. I think there may be a link, although I have never read of one.

    My logic is that we know that hormonal changes (increase in prolactin) cause a woman's ligaments to stretch to allow the pelvis to open in order to give birth, this is why some pregnant women get SPD. I am not hypermobile, and yet I have weak, stretchy ligaments (I have other similar injuries in addition to the one mentioned above) and when tested have raised levels of prolactin. Prolactin levels are also known to rise in response to pain.

    i spent years ten years trying to get my pelvis corrected, seeing doctors, specialists, having MRI scans because they suspected MS and seeing more than 10 different physios. It caused me a lot of pain and discomfort and sometimes my legs would just stop working. All the time it was like trying to walk with a thick rubber band tight around both legs.

    However, I found a brilliant physio (private again, of course) through the charity Pelvic Partnership pelvicpartnership.org,uk She corrected my pelvis in a couple of sessions and it has not slipped at all in the years since.

    If you are in the Midlands, or willing to travel, message me and I will give you the contact details for the physio I saw or the Pelvic Partnership should be able to give you the name of someone in your area who is experienced in treating this condition.

    Best wishes

  • i had 7 months of hormone injections, had my first on a tuesday and on the thursday i could of done catrwheels, i was absolutley pain free for that time, im now waiting for a hysterectomy, the only thing i experienced was hot swets(but i was put into the false menapause).

    hope you get some answers quickly x

  • Thank you.